wsieving

As long as you have Medicaid approval but I thought you had a coverage "start date" issue?

See, this is what is so confusing and complicated about the new way Missouri Medicaid is. There is straight Medicaid, which mostly nobody has, then once you are approved you have to choose one of 3 or 4 difference insurance carriers (Health Care USA, Mercy Care, Missouri Care, and I think maybe another), and then they give you another effective date. It is a huge mess, and I really think they are heading in a good direction, but need to improve it before it is truly better than the old system.

Here in NJ (my 87 yr old mother in law is on full Medicaid) most doctors who still take full Medicaid are in

the areas of the inner cities where there are drug dealers, shoot outs, robberies, etc.

My SIL who cares for her mother refuses to drive into those areas and I don't blame her.

My MIL's primary care doctor refuses to take Medicaid and HMO's too. His practice is

in a wealthier area of NJ (he used to be a few blocks from my MIL for many years and he

moved up into the hills).

This is a real shame. We have to be really careful which company we choose here because now that there are 3 or 4 branches of our version of Medicaid most docs only take one, while another doc you need to see may take another. I will be so glad when our government finally makes a way for people that truly need help to be able to get it and use it when they need to.

I had a shoulder injury: torn totator cuff...Is that what your husband ended up with too?

Hopefully your husband will be back to work soon - most workers' compensation insurance

companies require the employer to put the person back to work asap (on a job that would

be compatible with their injury/illness until they have a full recovery). These are

mandatory "return to work programs" . Your husband may want to look into that with his

employer as he'll get a partial workers' compensation payment and pay from his

company and it'll be like he's back to work. Then you will not have to worry so much

and deal with govt. programs.

DH had a distal clavicle resection with decompression, otherwise known as the Mumford procedure. Basically his clavicle bone was digging into his rotator cuff, doc said another couple of months and it would have been torn b/c it was really swollen and hemoraging. So they sawed off the tip of his clavicle bone and removed burrs. He was really lucky because they sent him to a surgeon who was skilled enough to do this the arthroscopic way instead of going in with a scalpel. This cuts down on his recovery time, but we still have at least another month of physical therapy. He is a truck driver, but the dedicated route he was on required him to unload his trailer at every stop. Since he has physical therapy 3 times a week, there isn't even an option for light duty anyway (his home office is 2 hours away, so couldn't even do office work), and if he were only driving or doing office type work, he would be making less than he does on work comp. Our biggest struggle here is that we are living on his income alone. He has always made really great money over the road, so I have been so blessed to be able to stay home. It is very important to us that our kids do not have to go to daycare. I know this isn't everybody's ideal lifestyle, but it is what we are comfortable with, and until he was hurt at work, we never required anyone's help or government assistance to make ends meet. I have tried to get temporary work while he is at home, but nobody around here wants to hire someone as temporary as I need the job to be. So we're kind of stuck, but hopefully at his next doc appt he will be released to full duty.

I must have missed your info, but how often does baby need to see pediatrician?

She only sees him once per month, but we went through a stretch before getting her specialist referral that she was going weekly. We won't know until Friday how often our trips to KC are going to be. I've never been through anything like this before and really do not know what to expect.

Well, I just got an email back from Baby Magic. I really do not know which ingredients to look for yet, so I just emailed them to ask them if their products were gluten free. They responded saying that they do not claim any of their products to be gluten free. Does anyone else use Baby Magic? I love their lotion, and really do not care for the others at all. But we figure that we will start out by replacing all of her personal care products, then add them back after she is showing improvement to see if she is sensitive to them. So hopefully we will get to use it again, but I'm sad....lol. I'd rather give up bread over Baby Magic any day .

Ok, I took a gander around the local health food store today as we are preparing to go gluten free just as soon as we see the GI friday. We are hoping that he doesn't have a problem with this as we really do not want our DD to have the endoscopy. Anyway, the owner was gabbing my ear off telling me she had the largest range of gluten free products in the state. She said people travel from everywhere to go to her store. As she was telling me about all of her products she mentioned to me that I may even need to get a gluten free shampoo for DD. Does shampoo really cause reactions for people who are really sensitive??? I have never read or heard this anywhere before.

Ok, well I guess I was getting excited over nothing. It is so hard to really freak when there is a glitch and you are already stressed out over a sick child. I called Children's Mercy today and spoke with someone who assured me that even without a card if her Medicaid was approved that she would be covered. So thank God we should be ok. We would have made it work even if we only had our primary insurance, but it is going to be so much easier without having to worry about the horrid copays.

I really hate the new way that Missouri handles medicaid. I suppose that if I were used to it, the new system wouldn't bother me, but it is so confusing now with the different branches of care. Thanks for listening to me rant!

Thank you so much for the great ideas!! I think leaving it for the great pumpkin will be a hit! And that list is awesome too! That is just what I was looking for. I am so glad I found this wonderful board.

So, for those of you BTDT parents of Celiacs, how do you handle Halloween? Do you still take the kiddos trick or treating? If you do, I am assuming that you separate the candy after you get home? Which candies are safe to eat, and which ones are not?

I am so frustrated right now I could scream!!! My husband is a truck driver and makes a pretty good living that way, well enough for me to stay at home (oh bless him). But he had to have shoulder surgery for a work related injury at the very end of July. He has been at home ever since, doing physical therapy, and drawing workman's comp. We can still live on what work comp gives him, but it is tight. We still have to pay his insurance premiums out of that, plus put money back in the savings, put back bill money, then live through the week on the rest.

Well, we pay 75 a week to keep his company insurance active. They raised their premiums this year, and raised copays along with it. Used to be 20 for doc visit, 35 for specialist, 100 for ER, and we paid around 60 a week for family coverage. Now it is 55 to see a specialist. So we were really freaking out, not knowing how many visits DD was going to need, already dipping into savings for several of her pediatrician visits leading up to see the specialist. On top of all of that we know that we are going to have to spend a boat load of money on gas because the specialist is 2 hours away, and our van gets really crappy gas mileage. But we have savings, and were going to make it work.

My Mom suggested that we try to get her on Medicaid. I told her we probably didn't qualify, and that I didn't think that kids who already had insurance would be approved anyway. Well, she insisted that I go apply, that all they could say is no, and if they said yes it would be a huge help. So I went, and to my surprise, they allow it as a secondary insurance meaning they pick up everything my primary doesn't including copays. I was so ecstatic! My caseworker told me her insurance should be effective September 1 which is great because her appt is this coming Friday.

Well, I got a letter in the mail today. I guess I gave to much information at the Medicaid office. I told them what she was needing a specialist for and when her appointment was. Wouldn't you know the letter I got in the mail says her coverage is effective 9/20/08..... her appointment is 9/19/08!!!! I had a nice little pity party for myself, and sucked it up. I just don't understand why these insurance companies have to be so cold hearted.

There was a number on the paper so I called it requesting an earlier date. They said it would take two weeks to move up her date, and that if I wanted to do that then I need to reschedule her appointment... I told her there was no way I could do that, I've already waited 3 weeks to get her in, and she was just weighed a few days ago and lost another couple of ounces. She said that DD should have straight Medicaid until then and that I should have received a card already for that. Which I don't have a card, and don't expect I'll be getting one.

It is just so frustrating because I really had to suck up my pride to even go in there, and then I get treated like I'm begging for handouts in the process. I just hope that I do not have any trouble getting them to cover any additional appointments with the specialist. I guess if that is the case, we'll just have to do what we can, our daughter is what is important here.

Sorry for the long rant, but I really needed to vent.

There is this store that I have been going to since I was a small child that is run by the Amish and they have some great things in bulk. But I'm not sure what types of flours and such that I need. Their prices are great and I want to stock up. Any suggestions?

We haven't gone gluten free yet. That is why I am so confused. Granted, the past couple of weeks our meals have a lot less gluten in them than usual. Not really on purpose, just how the menus worked out. So we really expected to have quite a reaction over the past couple of days because we have eaten a lot of things that have always bothered her before. All of her other symptoms are still there, just no watery diarrhea or diaper rash. I'm so perplexed by this.

I am so confused and frustrated right now. I just do not understand what is going on, and I am so worried that we are not going to find out. DD has not had watery diarrhea for nearly 2 weeks now. I know, I know, not the end of the world, but it is making me second guess what is going on with her. I mean, she had this for months, now suddenly not even pasta will give her diarrhea and it always would before. Her stools still aren't normal, they are very loose and wet looking, but no diarrhea.

Yesterday we went to get her on WIC b/c DH is on work comp, and we will take help where we can until his physical therapy is over and he can go back to work. Anyway, they weighed her and she has lost weight again and is now below the 5%. Her cheeks are still rashy, still dark circles under her eyes, still has swollen lymph nodes in her groin, but the watery diarrhea has seemed to disappear. Does this mean that Celiac may not be the problem? The same foods that seemed to make her that way before just aren't doing it now. I am just so darn perplexed. Still another week and a half before she sees the GI.

DH and I could both possibly fit some of the classic Celiac symptoms. Neither one of us seems to think it is reasonable that we both have it (what would be the odds?), but it is a definite possibility and we wouldn't be surprised which one of us it was.

These are my symptoms:

Weight issues all my life (gaining, not losing, to eating all I want and maintaining),

Joint pain since I was 17, now getting worse, started in my knees at 17 and is now in both shoulders as well as my fingers/wrists if I am doing anything intricate like crocheting

Chronic constipation in my late teens/early twenties

Now I have a BM anywhere between at least twice per day to 6 times per day (about half or more float)

ADD/Anxiety/Depression depending on the day, but I've really learned to control the swinging moods without meds because I really hate being dependent on drugs to be "normal"

Insomnia/wild dreams

constant fatigue

typically low iron

Struggled with cavities since I was 21... my poor teeth

And I don't know if this one counts, but I was reading somewhere about a link between Mono and Celiac, I had a severe case of Mono when I was 17 coupled with Strep at the same time

Now, here are DH's symptoms:

Overweight since late teens/early twenties

I've ALWAYS accused him of having IBS... food seems to go straight through him depending on what we have. He says it never floats, but he has loose stools more than anyone I know

He has always had high blood pressure

Sleep Apnea

A slew of allergies as a kiddo

Incredibly gassy....*pppeeeeeeew*

The past few years his teeth have started having more cavaties

His mother and his sister struggled with infertility and obesity, also his niece was diagnosed with rheumatoid arthritis at 3

I'm not really sure what to think. DH thinks it's me, but I lean more towards him.

Ok, so while we're waiting to see our DD's ped GI, I really want to have DH and I tested. I think it would give us more insight, and if one of us were positive then I probably would absolutely refuse an endoscopy for DD b/c we are 99% sure she has it anyway...

I was wondering if you think I could just call my doc and ask him to give me orders for a lab? I really do not want to have to make an appt for me and DH, pay the co-pays, when really all I want is a lab. As it is, we're forking out gas money and co-pays for the specialist for my DD... I just really can't afford anymore. But if the doc just ordered a lab, with no office visit, there would be no copay, and I could make payments on whatever my insurance didn't cover. Do you think it is reasonable for me to ask him to do that since DD is suspected of having Celiac? Or will we have to wait for a formal diagnosis from her doc in order to get testing done for us?

I'm waiting to see a pediatric GI at Children's Mercy. They are known to have the best pediatric docs in the state, so yes, hopefully he will be worth the wait! DD is seeing Dr Robert Kane, who is also the Professor of Pediatrics at UMKC.... hoping that is he is teaching students then he must know what he is doing (not always true, I know).

This seems like the longest wait in the history of waiting. It is even dragging by slower than that last month of pregnancy that seems to take a year. I've researched everything available on the internet, I've been to doctors, and now waiting on the specialist. Another 12 days seems like forever away. Does it always take this long to get in to see a specialist?

My DD is 14 months and she doesn't want to eat either. It started out being an only occasional thing, but now most every day is a struggle. She also chews and spits a LOT. I really think these kids KNOW that the food is going to make them feel *icky* and they do not want to put themselves through it.

Speech Language Pathologists work with kiddos this age & can help with oral motor/chewing/food texture aversions etc. It might be worth having an eval done. If nothing else, the SLP could offer suggestions to use at home.

I don't really think it's that she doesn't know how to chew then swallow. This is something new she's been doing the past 2 months or so. I am hoping that once we get her on a gluten-free diet and her appetite returns that she will stop doing that.

Does anyone know how long it usually takes for kiddos to get their little appetites back after going gluten-free?

Well I probably won't be much help, but our DD is 13 months approaching diagnosis of Celiac Disease. We are 99% sure that is what she has, just waiting to see a pediatric GI in a couple of weeks. She was exclusively breastfed also, but her stools at that time were pretty normal the first month or two. She started getting constipated a little after that (before starting solids). But I do not ever remember her having flecks of anything in her stool. Now that she exhibits the symptoms of Celiac that are so obvious, we can look back on her early months and totally see that she has always shown some signs. I do not think it is uncommon to see symptoms that early, but I think it may be extremely difficult to get a diagnosis that young.

Have you tried eating everything gluten-free for a couple of weeks to see if that improves her bowel movements? I hope you figure something out!

This is easier for an adult, but if you can get a child to take it, more power to you! A teaspoon or tablespoon of olive oil will help a LOT. Seems odd, but I had constipation for years and after taking one spoon a day, it cleared up! I don't remember if I took a teaspoon or tablespoon, but a child wouldn't need more than a teaspoon.

This doesn't sound odd to me at all. It is the same basic concept of caster oil or mineral oil. This sounds terrible, but when I was preggo with DD my pregnancy message board was always trying to find a way to kick start labor. Some of them couldn't hack caster oil, so they would do vegetable oil or olive oil. Those two proved to move the bowels more gently than mineral or caster oil but still did the job. It works pretty fast too!

I'm very new to all of this, but personally if she is suffering that much and you already have positive bloodwork, I would change her diet unless they think they may find something else during the endoscopy. In the end, do what you and your daughter are comfortable with. I'm sorry the doctors are taking so long and I hope your daughter starts feeling better soon!

Carob pudding sounds like a great idea! I'll have to try that! On days she truely does not want to eat, it will not help (she will even turn down ice cream these days), but on days she decides to eat I bet it will be a hit! Thanks!

How long did it take her to get her appetite back after going gluten free?

First I would like to say that I feel like a board hog, and I promise I will be more productive (replying to posts and etc.) after I've become more familiar with this condition. I feel terrible because all I've done so far is bleed everyone for information. I hope nobody minds .

Now on to the topic at hand... We have noticed that DD does this a lot, especially on days that we struggle to get her to eat (which is most days). We'll finally get her to take a bite of something and she'll chew it until all of the flavor is gone, then spit it out. We think maybe she knows that her tummy feels bad and that the food may make her tummy feel worse, so she chews it all up but doesn't swallow it. Am I crazy, or is this something that toddlers just do? My oldest two never did that, but maybe it is just a toddler thing.

Did anyone's children do this? It is so frustrating because she doesn't hardly eat anything at all anyway, really I don't know how she has the energy that she does. Yesterday was a good day. In the morning she chewed up a couple of french toast sticks, didn't eat until lunch and then had half of one of those little frozen salsbury steaks, later snacked on about 5 cheeze it sized gerber crackers, than ate the cheese off of a slice of pizza for dinner. On bad days she doesn't eat half that. We are waiting to go gluten free until the 19th when she goes to see a specialist in Kansas City. We are going to request after they draw blood that day for the go ahead to a gluten-free diet since we have decided against letting them do an endoscopy anyway.

Is it common for a household to go completely gluten free to avoid risk for one child? I don't know if I could trust my boys not to share a snack or something with DD (13 months). I guess this might be something I have to consider. Thanks for all the help ladies!

Ok, at the risk of sounding stupid, I am wondering as a newbie to this, what would be the things you would recommend replacing in the kitchen (pots, pans, utensils, etc.) when switching to gluten free?

I have also read that you shouldn't even store gluten-free food in the same cabinet with non gluten-free food. Is it really necessary to use separate cabinets? It isn't a problem for us to do that, I was just wondering if it is necessary.

If you use a bread machine, you have to make sure that it has not been previously used for gluten bread in order to avoid cross contamination.

I wasn't even THINKING about this when I accepted the bread maker from our cousin... If we clean it really well will it be okay, or do we just need to get a new one?

Is it necessary to have a breadmaker that has a specific gluten-free setting? A family member gave us a bread maker today because they knew we would be making our own bread from here on out, and I didn't know whether or not we could make yummy bread with it, or if we really need one with a gluten free setting like the Cuisinart.