Sunday, December 14, 2008

Air Purifiers

Seems that all I have been doing is research, research, RESEARCH! LOL!!

We have removed all allergens from JJ's room, including all stuffed animals. His pillow has that allergy thing on it and his sheets are washed more than ours! LOL!!

We are so thankful to my parents for buying us an IQ Air purifier!! The filters for that thing are EXPENSIVE, but so worth it as JJ is able to breath so much better!!

Speaking of air purifiers, I came across this article:
63 Air Purifiers to Avoid

Friday, October 3, 2008

Thus Enter The Ragweed

Yep. We are now deep in the middle of environmental allergies. Last night was a tough with. With his RAD, he had an attack and could not breath. A does of liquid abuterol and he was breathing better, but you can tell he is not 100%. (Although those smiles he gave me this morning after waking up were so PRECIOUS!!!!)

I found some Little Allergies Allergen Block. From the personal reviews, people are saying it works. I just put some on him.

I also met with an allergies last night at a MOSAIC group (Moms Of Severely Allergic Infants and Children). He suggested saline solution sprayed in his nose. So I got some of that too. I found SinuCleanse for kids (there is a coupon there for $2 off). JJ is a little scared of it, but there is a video you can watch which shows the apparatus in the nose of babies (JJ LOVES babies), and that REALLY helped him. I also tickle the side of his nose with it. Right now I have only been able to get one squirt in each nostril. But hopefully the more he sees the video the more comfortable he will feel with doing it.

Don't want to try it again right now as I just put on the Allergen Blocker (and you have to reapply if the nose gets wet).

Well, I would LOVE to hear from you if you have tried either of these products (or the adult version of the Allergen Blocker from Chloraseptic).

Monday, September 8, 2008

More Testing

Well, they have removed even more foods from JJ's diet. :(

I am a bit torn about this. On the one hand, it is more meat. Meat is acidic, and makes the body acidic which the esosinophils thrive on.

BUT I also know that JJ needs PROTEIN! He can't do beans or nuts or any legumes. And he cannot do dairy. Even raw goat milk/cheese. I know that he gets some from greens and such. But normally a vegetarian diet you can eat nuts, beans, legumes, etc. I am just not sure what to do.

And he has started waking up in the middle of the night and I am sure it is because he is hungry. I feed him a LOT of food, but most of it is fluff, so it goes through the body quickly rather than staying in the stomach digesting. :(

I am going to try quinoa and see how he likes it. I have done the flakes and they are nasty. LOL!! So I am going to try the grain and see how he does.

I will say though that things are still going WONDERFULLY well. Josiah has not thrown up in so long I cannot even remember!! And he has gotten into foods that he should not have (like chicken and watermellon and garlic) and has not thrown up! It has been so wonderful!!

Thanks to EVERYONE for their prayers for JJ.

Tuesday, July 22, 2008

So this is what NORMAL is like

Why no posts? Little to no throwing up!!! :) Things have been going so well! We have had so many people praying for JJ and are so THANKFUL to them. With the knowledge of things to help (making JJ more alkaline and giving him kelp), JJ has even been able to ACCIDENTALLY eat things on his no-no list without throwing up!

Now true, if he has something he is deadly allergic to (like eggs, which he also accidentally got into since my last posting), OR if he has too many accidents of eating no-nos, then he does have a reaction. But to know that I do not have to be extra super duper vigilant about every little thing that the OTHER kids eat. Although after the last mishap with the girls leaving out cookies that had been baked with egg, no more eggs at all in the house.

We do have another round of testing on Friday with the specialist. I am so thankful for him and for the feeding specialist, and for our new GI doctor!

Monday, July 7, 2008

Blessed

Click the layout for credits and to see it larger.
This is from the month of our hospital stay. A very sad time, BUT God can use all things for HIS glory! And while this was a very stressful and sad time, we are thankful for all that happened because it has brought us to where we are today. If it were not for the misdiagnosis we received in the hospital, we would not have sought out specialists.
JJ is now thriving! Glory be to God! We are so blessed!

Thursday, June 19, 2008

Health Snack For Kids (and Mom TOO!)

I am pretty sure most EVERYONE has heard about Nourishing Traditions by now. It is a GREAT book! I need to get me another copy as I have lost mine or loaned it away and have no idea to who or if and when I will ever get it back.

But anyways, we sprout grains and it is SO MUCH FUN! It is SO EASY that even a child could do it. In fact, it is a GREAT thing to get children involved in!! :)

Right now, we usually sprout grains to eat them raw. Sprouting grains release the enzymes (which your body desperately needs and has so little of) as well as make them alkaline-forming (allowing your body to be more neutral than acidic - I could go on and on about this, but the book Alkalize Or Die is a great book - read with prayer as it is not Christian). But since we are in need of the enzymes (which die when the food is cooked), we eat it raw.

And of course with JJ's on going health issues and food allergies, sprouting grains are just one way to help him get the enzymes his body needs as well as create different textures and foods for him to eat. :)

I love to sprout buckwheat. It is a gluten free grain (despite its name) and it not related to corn either (both things which JJ cannot have). It is a VERY mild grain which is great for children with a lot of food allergies. But also is great for picky eaters (because it does not have a strong overwhelming flavor). I LOVE Sprout People and the information they give on their site. You CAN NOT GO WRONG if you use the information on their site (and it is FREE! THANK YOU SPROUT PEOPLE!). :)

So make sure you do NOT have the toasted buckwheat groats or you will never get sprouts (if they are BROWN they are toasted, if they are white and tan and greenish, they are raw)! LOL!! Follow the directions for sprouting, and stop when the groats have TINY little tails. That is when they are sweetest!

We save all the soak/rinse water and pour it in the garden. It is ESPECIALLY good for plants/tress that are in really poor shape. We have a tree in the backyard that was near dead. I began pouring the water on it and VIOLA! That tree is doing GREAT now!

One thing I should mention is that when I do the initial soak of any grain, I always add hydrogen peroxide to the water. I cannot remember where I read to do that, but it basically kills all the bad stuff that can end up on the grain from harvesting/packaging/shipping/sitting on a shelf/etc. When I do this, I get a foamy yucky goo at the top of the water, so I know it is doing SOMETHING! LOL!! :)

Now you can do a BUNCH of HEALTH HEALTHY HEALTHY snacks for the kids. You can rinse and drain (after sprouting) and then dry slightly and eat just like that. YUM! You can also add some salt and nutritional yeast for a cheese popcorn type thing (although this is best done if they are dry). I dry mine in our dehydrator, but you can dry them by leaving them on baking trays in the sun. :) You can also use them in place of oats for a new take (and GF take) on granola. And Buckwheatie Bars are a definite favorite around here! I also found a recipe that looks really good that you can use the buckwheat sprouts as "Buckwheatie Crispies" and have your own cereal bars looks good!

And as I said before, sprouting grains is great to do with the kids! They get so excited to see the little tails. And what a WONDERFUL lesson/habit you are passing onto them! Plus, it is nice to have someone else to remind you, forgetful Momma that I am, to rinse and drain them as often as needed! LOL!!! :)

Sunday, June 8, 2008

Possible link between EE, acid body and autoimmune disease??

I am reading that the eosinophil granulocytes, or eosinophils (those white blood cells that are in over abundance in children with EE) are acid-loving (source, Wikipedia). This confirms the research I have done about trying to create a more alkaline environment for JJ's body to help with the food allergies.

When the doctor did the scope of JJ's esophagus (I got to see the pictures), I noticed that it seemed to be confined mostly to the middle part of his esophagus, with a tiny white spot here and there in the upper esophagus. I am curious to see what it would have looked like before I started the process of making JJ's body more alkaline. Would there have been more spread covering the entire esophagus, starting from the bottom up?

And his colon was clear. I wonder if there would have been more in his colon had I not been working on making his body more alkaline. And I am curious if he is healing from the gut outward, hence why the gut looks clear, and the lower part of the esophagus looks clear, but the middle is covered with white.

Eosinophils produce cationic granule proteins and release them through degranulation. Dengranulation of the eosinophils can result in low pH i.e. making the body acidic. So not only do eosinophils love acid (and therefore there are probably increasingly more and more eosinophils in an acidic environment), they produce acid as well.

It seems that once the body is more alkaline that will help tame the EE, but possibly not get rid of it entirely as it is, I believe, an autoimmune disease. So then the problem becomes determining WHAT is causing the autoimmune response of increasing the eosinophils? Is it possibly the HHV6? Is it an overly acidic body? Or is it something else entirely? I plan on asking the doctor to test for HHV6 to rule that out first as that is my strongest suspicion considering what I know about the link between HHV6 and autoimmune disease.

I also note that the eosinophils are produced in the bone marrow (source Wikipedia). Maybe there is a link to bone marrow diseases/malfunction and EE? Something to look into further.

So now to continue to work to make JJ'S body less acidic and more neutral. I have been so busy I have not had time to read any more of the Alkalize or Die by Theodore A. Broody. But I must admit that with all this discovery, I am VERY anxious to get reading it and implementing it. The only problem is HOW to implement it on such a restricted diet.

Saturday, June 7, 2008

EE an Autoimmune Disease?? HHV6??

I am VERY curious to know if anyone with EE had white patches. Was it a fungus? I am also curious if anyone who has a child with EE has treated them for candida?

And on the off chance someone has done this, I am curious if anyone with a child with EE has had their child tested for HHV6? Does anyone’s child se Dr. Goldberg (in CA) for their child’s reaction with EE??

In all the research I have been doing, and with what I know about my SIL’s son (who has HHV6), it seems that EE is an auto-immune disease. Has anyone else come to this conclusion? Any other evidence to support this?

I know that you are prolly like me and have done/are doing LOTS of research trying to learn more about it and hopefully find a treatment/cure. I am just curious if anyone has tried these things as I have not seen any research on this yet for EE.

Update

Sorry I have not posted in so long. Long story short, we switched GI doctors and are SO PLEASED we did! But of course that meant things were going to move fast (as we got in with him very quickly). He wanted us into Jewish Children's which meant calling them and explaining what was happening with JJ. I talked to four different people and finally got a call and was asked to come in in two days. WOW!

So that meant even more rushing around and scrambling for in two days he was having the test for EE done. We got everything fixed up and went.

MAN yesterday was HARD on JJ. It was GREAT meeting with Dr. Atkins at Jewish Children's. I have done a lot of research on allergies (from since 2004) and it was VERY interesting to hear his take on all that research. I had even learned some stuff he had not heard of before. We talked for about 2 hours. We go back on Monday for skin testing (NOT looking forward to that).

Something he mentioned which is new to me is that the rotation diet and wide variety of foods I have been trying to give JJ (because I do not want him to become allergic to something) might actually be causing him more harm than good. He said that there was no evidence, at least not in science or his personal experience, to show that an allergy develops from having too much of a certain food. Basically it follows with Dr. Toomey's belief. That someone has an allergy to a food. That sometimes you react immediately, and sometimes you are able to eat more and more of it until you reach that threshold. It is at that point that a person thinks that because they have had too much of a thing, they have developed an allergy to it. When in fact, they have always been allergic to it, it is just now they have had enough of it to show signs.

He said a LOT of stuff and my head is spinning. LOL!

Then the new GI doctor did the endoscopy and sigmoidoscopy on JJ. Most everything was fine except the esophagus. There is white all over it. Dr. B (the new GI doctor) took a biopsy and thinks it might be a fungal infection. There might also be the presence of EE there. We will wait for the biopsy results. I am supposed to meet with him sometime next week to discuss them. LOVING Dr. B!

If it is a fungal infection, I am wondering if the EE (white blood cells) are actually a way of fighting off the fungus? My friend suggested that we can try treating for JJ and it might actually help. I am wondering if those whose children have been diagnosed with EE have tried treating for candida and seen any results??

JJ did NOT do well with the anesthesia. He went under fine, but woke up with a start and vomiting and bowel movement and screaming. I was not in the room when he woke up. He continues to throw up and not keep liquids down. HE slept fine last night and drank a full bottle of coconut water (our electrolyte drink as JJ is allergic to Pedialite). He was able to keep it down. But woke up at 4AM having a LOT of dry heaves. :( We gave him some more coconut water. He did fine. He ate some rice puff cereal and seems to be doing well.

I hope this is all over for him (that the anesthesia is fully wearing off). I do NOT look forward to all the future skin tests that JJ will have to go through. :( Any advice for how to help him through that? How do explain to a two year old that this is for his benefit?? :(

Friday, May 30, 2008

Need Prayer Please

I finally decided it was time for us to see a different pediatric GI doctor. And I am SO THANKFUL that I did. I knew God was blessing it when we got in only two weeks after calling (as usually new patients take 2-3 months to get in to be seen).

As soon as I finished explaining the whole case history to the PA, she went and talked to the doctor. HE IS WONDERFUL! He is so nice and GREAT with kids! He made us all feel at ease. And he began talking about how we need to figure out exactly what is wrong with JJ and some tests need to be done in order for that to happen.

Enter the prayer requests.

The first one is that the tests require JJ to take some meds that he is not used to and to also go without food or water for a period of time (which I know will be difficult for him, especially since he really likes to drink). He will be put under in order for a biopsy of his esophagus to be done. This is extremely terrifying to me, but the more I read about WHY it needs to be done, the more I am certain it needs to be done (and should have been done as soon as we were forced to stay in the hospital back in October 2007!). (Your prayers for me to get over my anger that JJ has been out of the hospital and in the care of a different ped GI doctor and this was never suggested by her are appreciated.) He will be going through all of this Friday, June 6.

The second prayer request is that we are able to get in to see another doctor this past Thursday. The new ped GI doctor said that he really wants us to get in with another doctor is who one of the best in the nation (only an hour drive away from here) in dealing with the type of food reactions JJ is having. I was told to call and ask for an appointment. I did as soon as I was done with the new ped GI. There is nothing available till August.

JJ is now losing weight again at the rate of about an ounce a week. Sometimes during the week he is up, but he is usually down by the time they weigh him. He seems fine at the beginning of the week, and then, by the end, throws up constantly and loses all he had gained, plus more. If this keeps up, at his next appointment, he will have fallen below the 24 pound mark (last weight check he was 24.0 lbs). He is only 24 months old. I begged the lady to possibly get JJ in early, as his life might be at stake. The ped GI doctor said that this other doctor could tell us EXACTLY what JJ was and was not allergc to so that we would be able to get high calorie foods into him without compromising his system.

Aftre begging her, she agreed to write a note for the doctor and I would receive a call either Thursday or Friday. Well that night I received a call and explained the whole case history again. And again, emphasised the urgency in the matter, and could they please help me and my son by seeing him earlier. I was told tht it was allergy season and that they were extremely busy. People have made appointments and would be flying in from out of state and some needed retesting and so on and so on. That I should be happy that I am seeing the new ped GI who is doing this test (June 6th). That she would leave a note for the doctor and I should not get my hopes up.

Today I received another call, from a totally different person and yet again had to tell JJ's story (should I just give them the link to his blog?? LOL! I explained how I was really scared (I try not to use this blog to talk about all this stuff, which is why I created a seperate blog for this, but I need the prayer) that I might lose my son. He was losing weight again and is having severe reactions to the food. Foods he was not allergic to last month, he is now allergic to. Food he was not allergic to last week, he is now allergic to. I am quickly running out of foods to feed my son and need help. She said that the doctor was out of town until Thursday of next week and that she would leave him a note about JJ and see what they could do.

So I really need prayer that we can get in with this new doctor who specilizes in this kind of stuff. With him and the new ped GI working together, I know that I can at least be doing something. I finally feel like I have people on MY side and believe me and will fight FOR me and not against me in the care of my son. And for that I am so truly thankful. At last.

Saturday, May 24, 2008

God Provides

Today while we were out garage saleing, Josiah threw up with no warning. I am not sure why. We had just pulled up to a garage sale when it happened. After I finished cleaning him up, including taking off his soaked with vomit outfit, I realized that I did not have an extra pair of clothing like I normally do in the diaper bag. So I went up and asked the lady at the garage sale if she had any boys clothes. Turns out she only had girls, but did just so happen to have ONE outfit for a boy. And it was the PERFECT size for JJ. I am so thankful. God knew our need and provided it without us even asking or knowing it would be a need!

And now we find ourselves in need of a different kind of help. We have a lot (that is an understatement) of junipers in the back yard. (Why the previous owner put those in who knows, but they are a plague on the face of the earth!) The doctor has recommended getting rid of them to help JJ. With my husband's back, he is basically out of commission. So we have to ask for help from friends and the church. We HATE asking for help. We are ALWAYS the one who offers help and likes to GIVE help rather than receive it. But we have no choice. It needs to be done for the health of JJ. So your prayers that there will be enough helpers to volunteer to help and we can get this done all in one day would be GREATLY appreciated. Thank you.

Wednesday, May 21, 2008

Another Day

Well YEAH, JJ is eating again. He will have another weight check tomorrow, so we will see at that time if he is gaining/losing whatever. :) I have a feeling he is gaining, just because he feels heavier. But during those days of no eating, I KNOW he lost, even if a little. But as long as he is GAINING over the long run, I know they will be happy.

But still. The coughing, the mucous and the throwing up concern me. I hate always having to be on guard. I hate having to carry a throw up cup every where with me. I hate having to take all my kids out of a room when someone mentions they or their child is sick because I cannot risk JJ getting sick.

I do have hope, since he is only two, that he will grow out of this by five. But even then, can I give him things that I am unable to know, and not worry about it? Or will I forever be worrying about what he can and cannot eat?

At this point I even know more than the feeding therapist about my son and his allergies and the foods he can and cannot eat. I must admit that it is a bit frustrating as I really want ANSWERS as to why and how. It seems that children with food/environmental allergies (to an extreme) is becoming more and more prevalent.

At least he is eating today. And has not thrown up at all today.

Monday, May 19, 2008

More Glutamine

Well, JJ loved those cookies while they were hot, but is not so fond of them now.

So, I still think it important to get glutamine in him. So I put a small piece of the kombu in the coffee grinder and ground it up. I mixed it with some agave nectar and some sunbutter (like peanut butter but made with sunflowers, sold in most grocery and health food stores) and spread it on some bread. HE ATE EVERY LAST CRUMB! WOOHOO!!

I think I am going to do this instead of the bars simply because the bars are not eaten the second day and I cannot afford to waste any money/food.

Also, my cookbook came in today. IT IS SO PRETTY!! I can hardly wait to dig in! But first, a homeschool meeting calls me.

Saturday, May 17, 2008

Bad Two Days

JJ is in a funk where he is not eating anything he normally does. Amazingly, he has not dropped the weight like he should have. But it is so frustrating. I cannot figure out if he is not eating because he is a little sick, or has had too much stress put on his system by eating something he is sensitive to, or what is the matter.

He is coughing all the time. He has a lot of mucous which he gags on, making him throw up (he cannot afford to throw up). And now he is not eating. I am so stressed. I am taking on to much and not remembering to GIVE it to the Lord.

I don't know why it is so hard to give it to Him. His yoke is easy. His burden is light. And yet I have turned caring for JJ into a stressful and heavy task. I do not say burden because I do not view caring for ANY of my children as a burden.

-=-=-=-
That was written yesterday afternoon. This afternoon, after eating only a few of the moon rocks (oatmeal coconut oil cookies) I made for him, he feels as solid as a rock. I do not understand how he can be gaining weight when he is not eating very much. And the mucous he has in his body. I need to find out what is causing that and remove the cause from his body/diet.

Thursday, May 15, 2008

Glutamine and A Recipe for Kelp Energy Bars

Role of glutamine in food allergies...

Glutamine helps to prevent and reverse leaky gut, improve absorption of nutrients, as well as nourish and restore a healthy immune system. It can even reduce the allergic response when food is eaten that the body is allergic to.

God is so amazingly good. He provides above all we even ask or think!!!

I had seen that in a book on food allergies that I was browsing through at the health food store. The next day, I found the recipe below. In my search for the kelp fronds called for the in the recipe, I came to know that kombu was the same thing. Kombu is VERY rich in glutamine.

This is the link to the Kelp Energy Bars. My modifications:
I could not find any kelp fronds on the link he provided, so I looked around and discovered that Kombu is the same thing. So I bought Kombu from my local health food store. JJ cannot have any nuts, so I used sunflower seeds instead. I did not have maple syrup, so I used pancake syrup instead (one that I have that JJ can have).

It was a bit seaweedy for me, but JJ liked it, and the girls liked it, and my beloved liked it. So THAT is what counts. :)

I will say that these do dry out quickly. I think next time I will half the recipe. If it is too seaweedy next time, I will cut the kombu down to 3/4oz. :) These are best when warm right out of the oven. My kids kept begging for more and more. The second day, it was much more difficult to get them to eat it. But they did it. :)

Recipes In The Raw

I am so thankful that I was very into raw foods two years ago. There are so many foods in there that JJ can actually have!

I really do like Alissa Cohen's book and DVD's. They are the best. And she has a raw foods forum that has great recipes. If you cannot have something (like JJ cannot have mayo), search her forums (and the raw food recipes on other sites as well), and you can find one. I remembered recently the recipe for KFC type coleslaw. We had it a few years ago and it was delish! JJ cannot have cashews, but I am sure I can sub sprouted sunflower seeds for the same result! :)

And I made raw chili before without the tomatoes and really liked it, so that it something that is also possible for JJ, not to mention myself as I realize that my addiction to tomatoes (in the form of ketchup, I do not like raw tomatoes) is making my body too acidic.

Anyways, just two of my favorite recipes and some encouragement to look into raw foods for recipes that your kids can have and that taste good too.

Wednesday, May 14, 2008

Graduation

Well, JJ will be graduating from PT (physical therapy). He is only seen every other week, so week after next (his next appointment) will be his last. I am sad to lose her as she is absolutely WONDERFUL for JJ. But she feels that it is time, not to mention he is always exceeding the goals she sets for him. If he is not doing it when we come in, she waits two weeks (for our next appointment) and he is not only doing it, but doing it above and beyond what she was hoping for. :)

Plus it allows someone who is in real need of a PT get her. There is a long waiting list.

We will still have OT, and we start feeding therapy tomorrow.

Monday, May 12, 2008

The Worst Part

There is so much difficulty in dealing with JJ, his feeding issues and his food allergies. Of course there is the stress of making sure he is getting enough to eat, enough calories, etc. Then there is the stress of making sure he does NOT eat the foods he is allergic/sensitive to. Then there is the stress of him becoming allergic to a new food because you have given him too much of it.

But I think the worst part of all this is the stress it is putting on the girls. JJ has three older sisters: 8yr, 6yr and 5yr. They are the sweetest girls anyone could ever ask for. They all adore JJ and JJ simply adores them.

And as long as JJ is not coughing, gagging or throwing up - life is wonderful.

But the panic and stress I hear and see in the children when Josiah coughs, gags or throws up just breaks my heart. And EE (our 6 year old) lost it and got hysterical when JJ was vomiting so hard that his face turned red and the dry heaves set in. She was totally convinced JJ was going to die. It took her several minutes for us to calm her down.

And the responsibility that the girls have in helping out with JJ. They have taken it upon themselves, little mothers that they are, to make sure JJ throws up in his throw up cup and not on the floor. They have also taken it upon themselves to make sure that JJ does not get any foods he is allergic/sensitive to. And they do it, not gently with care and concern. But excitedly with panic. It has my in complete tears.

Thanks for listening.

Friday, May 9, 2008

AMAZING Allergen Free Recipe

Oh this is awesome!!! I am so excited! It is a video showing you ONE gluten free, dairy free, soy free, nut free (basically everything allergy free) recipe that can make cinnamon rolls, dinner rolls, french bread, pizza crust, waffles, the list goes on!!! And when she breaks it open it looks so soft and chewy!! I LOVE her tips on using the flour and making the foods!! I cannot WAIT to start this! Gotta wait till next pay period though, already out of grocery money - got some GREAT stockpiling done with some sales!

Video Part1:


Video Part2:


She does have a recipe book as well as a video showing you her story:


If you are in need of an allergy free cookbook, I highly suggest this one. The family's medical bills (including the specialty foods) are over $2,500 every month. And they are already over $70,000 in debt. Buying their book directly from them will help them in their medical bills, even if only slightly. :) I am sure every little bit helps (ask me how I know!). ;)

A High Calorie Recipe: Oat Fish (instead of goldfish)

I saw this recipe a long time ago on a raw foods board, and made it again today after remembering it when talking to someone on one of the lists I am on. It is supposed to take the place of gold fish crackers. JJ really liked it. And I remember when I made it for my girls when I first learned of the recipe. They could not get enough.

Whole Oats
Hemp Oil
Salt

That is it. Mix together in proportions that taste good to you. We use sea salt as it has a very unique taste. You could also prolly use dulse flakes, but it would definitely give it a different taste. And I am not sure it would be considered raw, but if you are not worried about being 100% raw, I think it would be fine. I found the recipe when we were 100% raw.

It is pretty tasty. Do not be reserve in your use of the oil. Hemp is a complete protein (which is good for those with allergies to proteins like my son is). And it really makes the taste. And do not omit the salt. It really helps bring out the flavor.

Thursday, May 8, 2008

Things To Try

So some suggestions:

Coconut milk - I totally forgot that I could make puddings and pies (raw recipes are the best) as well as cook rice or buckwheat in it and add mango (YUMMO)!

Flaxseeds - I have a few recipes for flax crackers (again raw recipes), and I usualy add it to the green smoothies.

Sunflower Seed Cookie Balls - oatmeal, sunflower butter, carob powder, honey, coconut oil mix and refrigerate.

(hopefully I can add more high calorie ideas)

Live and Learn

So I am learning that 4 cups a day of green smoothie was a bit much for JJ. His urine went all the way up to 7.5.

And, worst of all, he has lost weight. :( Not much, but down a few ounces.

So I will make only TWO cups of green smoothie a day. I need to continue the research on the acid/alkaline and make sure I give a BALANCE of foods to balance him out. So I need to add some acid foods to his diet. This is all so new to me.

I also need to find out how to get more high calorie foods into him that he is not allergic to. He needs to gain weight.

And to top it all off, JJ turns two today. :)

List Of Foods JJ Is Allergic To

I like how the specialist put it and I totally agree. Allergies are like a spectrum. On one side is nothing and the other side anaphylactic shock . Sensitivities and allergies fall along the line.

Eggs (closer to the anaphylactic shock)
Nuts
Soy
Legumes
Sesame Seds
Garlic
Bell Pepper
Citrus
Pineapple
Gluten
Dairy
Tomatoes
Avocados
Bananas
Apples
Pears
Corn
Grapes/Raisins

Difficulties

First, a praise to God for JJ getting in with the feeding therapist we wanted him to. She is the only one who drives up once a week to work with the specialist doctor we are seeing. We were told it would take months before she had an opening. So we are so thankful to God for getting us in.

Now comes the difficulties.

No one knows that we have taken him off the formula. I know I need to call and talk to the specialist, BUT I need to have some weight checks done first.

Secondly, they like to do the feeding clinic weekly, and it is on the other side of town. So twice (sometimes three times a month), I will be away from my other girls (because we homeschool) for 4 hours and 3 hours in the same week. This is not doable for my husband. It already had put a strain on him that I was gone for four hours every other week with JJ's physical and occupational therapies.

We don't know what to do other than to pay someone to watch the girls at our house. I must admit that I do wish that the specialist was able to come to your house. That would make things easier on us. But I am sure it would make things more difficult for the therapists. But especially for the feeding clinics, for those with severe allergies, my home in full of foods JJ can have. It would be so much easier so they can help change my HOUSE/environment to meet JJ's feeding needs. But I digress.

Your prayers for us are appreciated as we try to find someone who is willing and meets our standards. Or for Him to provide a different solution.

Tuesday, May 6, 2008

Acid Trip: Day 2

WOW! After two days of green smoothies and everything mentioned in the previous post (including 1-2TBSP of apple cider vinegar a day), I just tested him (right before bed time):

saliva: moved down from 8.0 to 7.8
urine: moved UP from 4.8 to 7.0!

This after only 48 hours (he was tested the same time two nights ago).

AND to top it off, JJ is allergic to avocado. He grabbed a tasteful (about 1tspful) tonight. Normally it takes only the SMALLEST of small amounts to make him either vomit, break out in hives, or do both. Tonight, he simply coughed that warning cough he does when he is allergic to something. I am POSITIVE that if it were not for the changes we have made already that he would have totally thrown up like he has in the past. I AM SO EXCITED!!!

And to top it all off, this boy feels HEAVY! I am so thankful to God for the changes I am seeing!!

Acid Trip

So JJ began throwing up again. I am pretty sure he is sensitive/allergic to corn. He is now totally on the new formula - Neocate Jr. The specialist said corn would be the only thing he could show a reaction to in it. Once we took him off it, his runny nose went away immediately. As soon as we gave it back to him, the runny nose came back.

He is now throwing up sardines - which he was able to eat fine before. He is also doing that cough which means "I am allergic to this" with apples. He is also throwing up raisins - violently so, even going into dry heaves which turn JJ red in the face from the force of them. Poor baby.

SO I have removed corn from his diet, along with raisins and grapes, as well as apples and pears (my 3 daughter had that cough whenever she ate apples and pears and would actually throw them up - but now she can eat them just fine - we are removing pears from JJ's diet as a precautionary measure.

I must admit that it is hard to deal with all this. Especially when he gets fussy. We can't let him cry, because he throws up and that makes him not gain weight. And especially now that he is not on any formula (I am not sure what the doctors will say about this), I cannot afford for him to lose any weight. I am hoping that I can get him to THRIVE and gain weight WELL (even HEIGHT) on what we are doing as our own intervention. It will give me some leverage with the doctors, especially when they find out he is not on formula.

So what are we doing instead of formula? Green smoothies. 60% fruit 40% greens. Then I add coconut oil (an anti-fungal, anti-bacterial, anti-viral) and flax seeds. He gets about 4 cups of this throughout the day. I started this yesterday. I also give him Vruit (the fruit/veggie juice the specialist recommended) juice two to three times a day. And he also gets one or two drinks of hemp milk or coconut water with hemp oil. To this I add apple cider vinegar (more on that in a minute), a liquid calcium/magnesium supplement, and PB8 (one of the best pro-biotics on the market), also started yesterday.

I am thinking of adding more apple cider vinegar to his diet (probably in his Vruit juice). I was talking to a dear friend who was talking about how an acidic body can cause the body to have allergies (among several other things) and apple cider vinegar causes the body to be neutral. Green smoothies also help the body go from acidic to alkaline.

I had been testing his saliva and he was always an 8. I thought that was a good thing, but it turns out it is not. That body can be too alkaline. BUT, I had not tested his urine. She suggested that his urine might be very acid since his saliva was so alkaline. We theorized that the high alkaline saliva was probably the body's way of trying to correct an acidic body. So I tested his urine.

4.8!!! YIKES!!! VERY acidic!

I have the book Alkalize or Die by Dr. Theodore A. Barody, but have never read it. So now I have a reason to. :) It turns out I am also very acidic (just from reading the symptoms of an over acidic body). So this will be a journey my WHOLE FAMILY goes on.

Here is a video about green smoothies from the lady who wrote the book on them! I discovered Victoria Boutenko when we first started learning about my daughter and her allergy to gluten and dairy. We did a lot of raw foods, and still do. I will say though, she looks TONS healthier now than she did when she had been on just raw foods for several years. She is looking good! I need to get back on the green smoothie wagon myself.

Sunday, April 20, 2008

Finally Crying

I am not sure why I have not cried about the trauma that I went through in the hospital with my son. I have not shared a lot of the details as they are very personal and VERY painful. A lot of accusations, hurtful words, glaring eyes and threats were made.

I was sharing the details with a friend last night and I just cried. And I really had a hard time stopping. After she left, I went upstairs, crawled under the covers and just cried and mourned. Brian just held me. Not knowing what to do.

See he had mourned the entire time we were apart. I guess because I was there in the middle of it - fighting for my son, fighting for what was best for him, and having to be there for him and be strong for him, I did not have time to really break down and cry. I couldn't.

But in talking about some of those details last night, it really hit me what had happened. And it was OK for me to cry.

My friend also has had her share of trauma involving her children. The birth of her son, her first child, was so traumatic, it took her nine years before she was able to scrap it. I have another friend who lost her son just months after his birth. Her scrapping him keeps his precious memory alive. I am not sure where I Fit on that continuum. I have more of the story to tell that what I have already share here on this web page. I am just not sure I have healed enough to scrap it. In fact, I have not done any scrapbooking since I realized my son was sick.

I am just so thankful to God that JJ is getting better. So thankful to Him that my family is safe and together. So thankful JJ is alive. So finally, six months after we have been released from the hospital, I cried.

Wednesday, April 16, 2008

PROGRESS

We have been trying several of the techniques shown to us by the specialist in order to get JJ to eat. Today, after weeks of him refusing to eat cut up meat, he ate chopped up meat! We got the chopper, and I put sliced deli meat in it, gave a few chops and had JJ chop a few times. At first, it just sat on his plate. Then he took a pinch. Then another and in no time his plate was clean of meat and rice! WOOHOO!

We have also been doing a lot of research on the reflux issue. I have been adding a liquid calcium magnesium supplement to JJ's evening drink. It has really helped him sleep through the night.

He gets a papaya chewable after a meal where he actually EATS something (more than two bites).

And I have also started adding apple cider vinegar to his evening drink. He is actually waking up HAPPY in the morning!

As for physical and occupational therapy, he is doing fabulous! He still is very low tone and they are working on him with touching textures.

I am so thankful to know TERMS now of what he is and what he needs to be doing! He is still not where he needs to be, and I have no idea how long therapy will last (especially now that they are adding feeding therapy).

I must admit I am so frustrated. They did a feeding evaluation right after his release from the hospital (end of Oct 2007), and said he would be fine. I told them he wouldn't and that we needed this. If only they had listened to me.

Thursday, April 10, 2008

Return to the Specialist

It has been a few days since the first trip to the specialist and I went back to finish up the talk. The part where they give us the plan for JJ. I had expected it to take only 1 1/2 hours (since that is the time we were allotted on the original day of his appointment. Instead I was there for over 4 1/2 hours. I have a LOT of handouts to read over. Some talk about how a child moves from breast/bottle at birth to eating table foods, and the mistakes that a lot of parents make in the transition. Usually kids have no problems, but sometimes they do. Like in JJ's case. We did the same thing for him we did with our other three children, but it didn't work for him.

Some were specific to JJ and how we need to do things. A feeding routine, not to mention exactly what he will be given to eat at those times. How he is to sit, and how we present the food to him. The weaning off of Elecare (which has soy in it, something our GI doctor did not know, and I was told by the specialist that most GI docs don't know) and onto Neocate Jr. How JJ is to sit, chew, move his tounge, use his hands, the words we can and can't use at the table. I must admit, it is a bit overwhelming.

And at the same time ABSOLUTELY FASCINATING!!! I have known a few of the stuff we were told (that most of the general public is not aware of just because they have not done research OR really had a NEED to research it to begin with). But everything else she was saying ... Oh I wish that EVERY GI doctor in the world could hear her speak.

It amazes me that we take a class to learn how to give birth. Sometimes we even take class on how to diaper and burp a baby. Hey, I could not even been dismissed from the hospital after giving birth till I went to a class that showed me how to bathe and feed a baby (despite the fact this WAS my third child). But there are NO classes teaching about the feeding growth of a child and how important that 4-6 month period is. How the tongue and jaw and EVERYTHING in the mouth changes. But I digress.

No, wait, gotta rant on the fact that there is NOTHING to prepare a parent for severe food allergies/sensitivities. Even the GI docs are baffled. They see the child as a stomach and not a whole person. Hence why JJ was on Elecare WITH SOY even though SOY is a major allergen of his. I cannot TELL you the difference in JJ since lessing how much Elecare he gets. But I am getting tired of the vomiting while we are in transition. BLECH! The coughing and gagging. The UP ALLLLLLLLL NIGHT!

We saw the specialist on Tuesday of last week, and in just the week and two days since we have seen her, I have seen progress in JJ. And he is gaining weight again. The extra Elecare I was giving him (pounded into my brain that it was best for him because it was his only source of protein and calories) was making it worse. My poor baby.

But now we have a plan. I have a LOT to read through. And a lot to change. Baby steps. I need to remember baby steps.

The Specialist

First, we want to thank everyone who was praying for the appointment with the specialist. The doctor was extremely knowledgeable. We have a LOT of answers and a lot of hope!

This is a VERY long and detailed letter. I know most of you will not read through it all. But all the details are here if you want them. :) If not, just skim or skip it. :)

Now to the wonderful news. JJ DOES NOT HAVE RUMINATION SYNDROME. Brian and I are a bit frustrated at this news, but we also give God the glory for it too. If JJ had not been diagnosed with rumination syndrome, with something so rare, we would not have sought out the specialist.

Basically rumination syndrome means you are bringing up the food on purpose. There are two keys here:
Firstly, that it is done on purpose and secondly, that you can actually see him chewing on the food after bringing it up. JJ was not bringing up his food on purpose, even though he was making the face (more on that later). And you could not see him chewing on the food that was brought up.

SEVERAL factors have contributed to JJ’s condition.

Turns out that because of JJ’s food allergies/sensitivities, his body was not able to process the nutrients in the food, hence him losing the weight. We all have villa in our stomach. We we eat something that we are allergic/sensitive to, those villa swell up and prevent the body from absorbing the nutrients it needs to thrive. I knew JJ would most likely be allergic to gluten and dairy (as his two older sisters are), but had no idea about other allergies/sensitivities. I was trying to find foods he was not allergic to, but in giving him food after food he was allergic/sensitive to, he was throwing up frequently and his villa was not allowed time to reduce in swelling to absorb the food he could have. So not only was he losing weight from throwing up, but he was also losing weight because of the villa being constantly swollen from giving him foods he was sensitive/intolerant to.

In the hospital, though I begged them to listen to me about his food allergies, their focus was his failure to thrive. And in focusing on that, and ignoring his food allergies, they were compounding his problem. By bypassing the stomach and going into the gut, you bypass the villa so the nutrients goes into the body and you gain weight. This is a great way for putting a band aid on the problem and NOT fixing the problem. The problem was his food allergies/sensitivities. That would explain why he no longer was losing weight or “ruminating” after being dismissed from the hospital. Rumination syndrome does NOT go away so easily. This is most likely why the GI doctor did not believe JJ had rumination syndrome.

However, the Elecare he is on has soy in it. One of the things JJ is pretty allergic to. Because it is so extremely broken down, the body can take more of it before it starts to show a reaction (what I thought was signs of him ruminating again --- the face and the weight loss). But now his body is taxed out on the soy and breaking down. JJ is very sick right now. Has been throwing up frequently and has bronchiolitis. The specialist was sad to hear that the GI doctor did not take us off Elecare as soon as she found out about JJ’s allergy to soy (the GI doctor found out only days after starting the Elecare while we were still in the hospital --- but since he was not throwing it up, did not even think about the damage it could possibly do to his body).

He also might be allergic/sensitive to corn (and many other things we do not know about because allergy tests are not very accurate for children under the age of two as their immune systems are still growing and changing). That is not to say that the allergy test that we had done is not accurate (as we can see in his reactions, he is most definitely allergic to dairy, egg, soy, legumes, gluten), but that there might be other allergens that did not show up on the list, or the one’s that did show up, his body might outgrow as his immune system continue to mature (especially if not being taxed by other foods he truly IS allergic to).

So at the evaluation, they watched and observed JJ eating and drinking. He is not making the proper movements with his jaw that he should be at this age. In fact, he has this little move, subtle as it is, of arching his back and turning his head to the right to help him swallow food. This is part of the reason he does not like to eat meat. It is a difficult food for him to chew and swallow (even with his special little move). So pre-chewing the meat for him right now (with a carb) is a great way to get that meat in him. To do this, you take some Cheerios and some turkey meat and but it in the chopper (he can help too) and chop chop chop. :) It is not pureed, but it is pretty tiny! :)

The faces JJ are making are similar to the rumination face. Difference is stated above. So that is why it was easy for the mean House-like doctor to confuse rumination syndrome with the GER that JJ has. The specialist does not use the term GERD, but GER instead. She had Brian and I perform some food exercises ourselves and then look at each other while we were doing the exercises. I saw Brian making the face, but he was not ruminating. It will take some work to get JJ to be better able to eat. The Zantac he was on was not helping. Zantac (and other things like Previcid and such) do not prevent GER, but simply lower the acidity to that when you do reflux, it does not burn. The only way to get rid of the GER is to remove the foods that are causing it.

Basically the feeding issue is like a mountain of eight levels. At the top is the feeding issues. That is what we see. The bottom 7 levels are all seen, but usually not understood by the parent and is not taken into a feeding specialist until the feeding issues arrive. If only we had known to take him in when we saw the other signs, we could have avoided the feeding issues and weight loss. :( Unfortunately six of the seven levels below feeding have been compromised. Only the environment was listed as a positive (loving and supportive family, parents who care and seek best for their child, loving and playful good relationship with sisters). The other 6 areas are covered in the previous 5 paragraphs.

Thankfully, even though JJ was sick the day of the evaluation, because he is such a GOOD BOY, they were able to evaluate him and get what they needed to see from him. However, because he was so sick, we were not able to finish the talk afterwards (a 3 1/2 hour parents doctor conference). She was kind enough to skip her own lunch and give us the above information (which was about a 2 hour talk). We will be rescheduling for me to go back to get the plan of how we get him to where he needs to be.

The doctor said JJ’s case was very unique (and was upset at the trouble we were given in the hospital). But that there is great hope for a full recovery. First step is to get him off Elecare. She is also very supportive of the way we do things (more naturally) as well as supportive of us utilizing what we can in network (which she is not) so insurance covers it. And JJ is no longer on Zantac.

This is what we have been praying for. The specialst is truly an answer to prayer. I am glad it is finally happening NOW, but saddened that we had to go through so much, cause more damage to JJ, and waste so much time (and heartache in the hospital) over this. And while I wish that I had been listened to in the hospital, that it WAS his food allergies/sensitivities, again we thank God for the misdiagnoses of rumination syndrome. If it were not for that, we would not have gone down this path and finally be getting the help that JJ needs and deserves.

Your continued prayers are appreciated. It will be a long process with a lot of hard work (and also a lot of finances). Thank all those of you who did read this far. I know it was/is a lot of info, and it is only the tip of the iceberg of what we were told. But it gives you a bit of greater insight into JJ and the struggles we are currently facing. If you know anything about anything of the above and have suggestions, please feel free to share.

As for the bronchiolitis... We got in to see the pediatrician right after the evaluation ended (including her skipping her lunch to talk with us). The ped doc did a nebulizer treatment with abuterol. His blood oxygen level went from 88 to 92 after the treatment. JJ slept all night for the first time in a LONG time. I am not sure if it was the nebulizer treatment (which wore off long before bed) or what, I am just thankful he slept. He woke up and because he is not drinking/eating has little to nothing in his stomach. He had dry heaves almost every 40 minutes from 6 until 9, when he fell asleep and slept until noon. I did not give him any Elecare Thursday night (not knowing that he had to be weaned off it), but I do not think it would have made much difference as he would not have kept it down anyway. I think that not having that stuff in his system anymore is helping him to finally sleep! And it will allow him to heal from the bronchiolitis much faster.

Thank you again. Blessings, Paula (for all of us)

PS...I just want to add that if your child or a child of someone you know has severe feeding issues, and you are not happy with the care the child is receiving (like shock treatments - horrid I know), the specialist we are seeing is a pioneer in her field. I will be happy to give you her info and you can call and if nothing else talk to her.

Wednesday, March 26, 2008

The Next Step

We finally got an appointment with the specialist. As I hopefully mentioned before (not sure what I have posted at this point or not) there are only a handful in the country who know what rumination syndrome is and treat it. I have a feeling our GI doctor does not believe in rumination syndrome. She kindly nods her head in a patronizing way whenever I talk about how my son has started ruminating again.

The specialist is a psychiatrist who specializes in pediatric feeding disorders. The evaluation takes all day long (from 10AM till 4:30PM) and costs $1500. Up front. And no, insurance does not cover the cost. And no, the plan my husband's work has chosen will not allow us to do good faith (meaning that because she is the ONLY specialist in the area, the insurance company will pay as if it was in network). I am thinking of setting up a donation button for those who wish to help with medical costs (in case any rich person just happens to read this).

Of course caring for my son is priceless. I just pray we do not have to get any deeper in debt in order to do it.

(This is the first up to date post, so this post and all following will be accurately dated as to our journey - all previous dates are just playing catch up telling our story.)

Tuesday, March 25, 2008

Where We Are Now

JJ has reverted back to a lot of old behaviors.

He is VERY clingy. Needing to be held almost constantly. This of course makes me feel HORRIBLE because everyone says that the cause of rumination is a bad relationship between mother and child. So I worry that I did something and JJ felt distant, and now, with the rumination, is terribly clingy in order to ensure that he stays with Mommy.

He is back to being VERY oral. Everything in the mouth. This was a behavior he developed while in the hospital, so I have hope that he is not too far gone.

He is losing weight again. Between March 18 and March 24 he lost 3 oz.

I can see the faces again and hear the noise of him ruminating. In all my research, I have never heard mention of a noise associated with rumination. And it is very faint (but very distinct). The only reason I believe I am able to hear it now is because I am acutely aware of everything JJ does because of the fear of rumination again.

More later which will show up as previous posts detailing our journey.

He is not eating solids very well (he had no problem after the hospital). Even on his favorite foods, I am lucky to get more than 3oz in him. He wants a lot of drinks (because of course drinks are easier to ruminate). I have been told to thicken his drinks with oatmeal cereal, but he doesn't take them. And now, he is even drinking less. Of course because he is not hungry/thirsty because the rumination makes him always feel like he has something in his tummy.

Monday, March 24, 2008

Weighing In

I have to get records for the hospital stay to know what he was weighing all through.

3/24/08 - 11.06kg
3/18/08 - 11.14kg
3/10/08 - 11.15kg
I have to say that at this point I knew JJ was ruminating again but still told to wait it out. I came in on the 10th after calling on the 5th saying I believed he was ruminating again. So it is possible he lost even more weight between the last weigh in and now.
1/29/08 - 10.61kg
The reason there is two months between this weight and the next one is that JJ was doing SO WELL that it was determined that we should come in every two months at this point.
12/20/07 - 9.895kg
12/11/07 - 9.825kg
A little bit of weight loss from illness
11/27/07 - 9.99kg
11/6/07 - 9.01kg

Thursday, March 6, 2008

After The Hospital

They finally wean him off the tube, but we have to stay another 2 (or was it 3?) days with everything for him by mouth.

We are finally released from the hospital after a full month, and JJ continues to thrive at home. He has both physical and occupation therapy, and at his evaluation after being released, he is considered about a 12-13 month old, even though he was nearing 18 months.

His PT/OT is every other week, because they felt that I was capable of doing therapy at home with him during the other week. And JJ has blown them away with every visit. I am frequently hearing the therapists comment on how they are amazed at something he is doing, or how they thought it would take him MUCH longer to reach the point that he is at now.

I would watch him diligently. Always by his bed during nap and bedtime. I would constantly be watching him while we played and interacted. I was not going to let any sign of rumination pass me by. I knew what to look for now, and I knew his allergies now. Avoid the allergy foods AND avoiding the rumination face would secure JJ getting healthy and staying healthy.

Wednesday, March 5, 2008

Sticking A Tube In Him

They stick the tube in his stomach, and almost immediately he throws up. And he throws up a LOT. Even the nurses commented on how they could not believe there was so much in that tiny body. I was no longer allowed to give him any food or drink by mouth.

That night he is SCREAMING. ALL NIGHT LONG. And I can do nothing about it. Is he hungry? Is he not getting enough in the tube? Is the Elecare harming his body and I don't know it. He made that face the doctor made when he showed me the rumination face. And he made it all night long. Was he trying to ruminate and there was nothing there to come up?

(UPDATE: the specialist said that if he had rumination syndrome that he would have been able to bring up and chew on the acid in the stomach or even from the gut!!)

Next morning Dr. House-like comes in smiling. The throwing up of the contents in his stomach and it being SO MUCH confirms the rumination diagnosis. He is keeping everything in his stomach and just ruminating on it all day.

So they move the tube into his gut. This was a horrific thing for him (and me). The allergy results are finally in and given to EVERYONE. :)

JJ becomes a case study. He quickly becomes known as "the rumination baby." I can feel the cold stares as everyone knows that the child ruminates because of the horrible relationship between mother and child. All the students come in to gawk at him. And oh, the "lucky" student who is assigned JJ for the day.

DAYS go by, and I keep asking when can I feed him? When can we get him off the tube?

WEEKS go by and I am finally allowed to give him a small amount of food and drink. He does well. Every day, I am allowed to give him a little bit more by mouth and the drip into his gut is reduced more and more until it is only at night. And then that is reduced slowly as well.

I become an expert in resetting the machine, and knowing when a new bag is needed. I end up the nurse for my son.

Tuesday, March 4, 2008

Diagnosis

Still being held in the hospital against my will, mean old Dr. House-like doctor comes in smiling. His whole demeanor changed and he said that JJ had rumination syndrome. I was thinking this guy is off his rocker. My son does not have a cow's stomach. God does not make us that way.

The doctor went on the explain that JJ will make a certain type of face (and then proceeded to show me the face) and that was how he brought up the food in his stomach to chew on it. I explained I have never seen him make that face, but there were times that I did see him chewing on what he had brought up and just thought he wasn't old enough to know that when something comes up, you spit it out. The doctor explained that I would not see the face because it was something that he would not do when he was interacted with (which I was always interacting with him). He said that JJ prolly was able to sit in his car seat for hours without fussing. Yes he was. And prolly did not fuss when in the cart at the grocery store. True again. Went to bed easily and was prolly the most contented baby I had ever known. YES! And I thought it was a blessing. At the end of the conversation (in which JJ was in the crib) he said he had observed JJ make the face a few times (he gave a specific number, but this was back in OCtober of 2007, so I cannot remember the exact number, but I do remember it was less than 5). He said that because he was a professor at a college he gets to see some very strange and unique cases. And in his 40 years of practice, he had only seen three cases.

The doctor then told me to watch JJ for the face and he left. Thankfully a friend of mine was there. After the doctor left, she mentioned how she had seen JJ make that face on occasion and just thought it was a cute little face the baby would make.

THE FACE:
It is very difficult to explain, and even more difficult to show, but basically, the chin and lower lip move inwards, the tongue pushes out, and sometimes the eyes squint.

I then turned on the TV for him to watch and had my friend observe. She saw him make the face several times (again, I cannot remember an exact number). I was floored.

The next day, I had to get his weight up. He had lost TWO POUNDS while in the hospital those first few days while no one knew what was wrong. And because of his allergies, I was giving him hemp milk instead of formula because he threw up every formula in the grocery store. Hemp milk was the most caloric of all the fake milks. But still not high enough and not high enough in protein either (although still better than other fake milks on the market.

They gave him Elecare. He took well to it, but of course I was still scared he would throw it up. We gave him more and more and more food. I was given all day to get him to gain weight or the would put him on a feeding tube. As irrational as it sounds, I was scared to death that if they put him on a feeding tube, he would never eat by mouth again and it would be a struggle to ever get him to eat by mouth again.

The time came, and they had lied to me. They never even weighed him. I was threatened. He would have the feeding tube put in and I did not have a choice.

Sunday, March 2, 2008

Going Downhill and Fast

A week or two after we had the blood test done, and we were waiting for results, Josiah got a cough. I was a bit worried and took him to the doctor. We both were worried about croup, but that night, there was no barking cough, so I thought that was the end of it. But the next day, I could tell he was laboring to breath. I took him to the emergency room.

His blood oxygen level was in the low 80's and it took a large amount of oxygen to keep it in the low 90's. They immediately took him back and put him in a special room. A respiratory specialist came in. There was a lot of talk. They transported him (along with me) by ambulance to the children's hospital so they could keep him on oxygen.

It wasn't until I was in the ambulance that I realized they were talking Pertussis. We get to the hospital and they wheel JJ into a room in the children's wing and there is yellow tape everywhere and people are wearing armor (not really amour, but protective wear as well as masks). There was a new respiratory specialist who gave JJ nebulizer treatments. He told me that he did not think JJ needed them, or that they would help, but that he was ordered to do it. He also took off his mask shortly after the first nebulizer treatment. He laughed and said JJ did not haver Pertussis. But it would take three days before anyone else believed me that it was not Pertussis and they would stop wearing the protective wear and for them to take down the yellow tape and warning signs about contamination.

No one knew what was wrong with JJ, but just two days after being admitted, he was breathing fine and I expected to be released from the hospital. But I would be held in the hospital against my will. During that week, as well as the first few days of being in the room, I was looked down upon, and talked badly to. I was gossiped about behind my back and made to feel like I was the worst mother ever. No one knew what was wrong, but it was sure that I, the mother, was the one to blame.

No one could give me answers, but because JJ was failure to thrive, I would be kept in the hospital. We do not vaccinate, and we did not give JJ the Vitamin K shot when he was first born. Our regular doctor was on vacation, so we would not be able to see her, and the doctor on call was a real life Dr. House (from Fox TV). He was a mean mean man that blamed me and made me cry. There would be a full investigation launched. And he was certain that I had damaged my son's brain and that was the cause of all this so an MRI was ordered.

JJ had to be put under before going in, and of course I could not go in with him. I keep begging them to let us go home. This is all because of the food allergies. I am waiting for the results, and once I get them we will know what we can and cannot give him. The he will gain weight. But of course no one would listen to me.

After the results for the MRI came in, and his brain was perfectly normal, I was certain that JJ would be released.

Saturday, March 1, 2008

In The Beginning

All of my children have been slow to gain weight. Tiny little things that once they hit two years old just caught right up in height and weight, so there was never any real concern.

Then we had JJ. Our son. And he was a plump little thing. In fact, he was always a little high in the weight percentile, even though he was also a breastfed baby like my daughters were. So we had NO worries about this little one.

Then came a tremendous stress in our lives. We thought we were supposed to move to Texas. So we had all our stuff shipped there, and went looking for a house there. After looking and praying and PRAYING, we felt that God wanted us to stay in Colorado. But now our house was under contract and we needed to find another house here. Major stress. Not to mention the fact that in order to save money we did 90% of the packing ourselves. More stress. Not to mention that there was extended family stress added to all that.

JJ slowly weaned himself from breastfeeding before he was 9 months old. He also began losing weight. So much so that by the time he was 16 months he was down to 16 pounds.

He threw up frequently. Just enough to make a mother start to worry, but not enough to make her obsessed in finding out what was wrong. I figured he was allergic to the foods.

I could tell when he was going to throw up. He always had a certain cough before he threw up. It wasn't until I gave him a small amount of egg (about pea sized). He made the cough, so I was afraid he would throw up. Sure enough he did throw up and his face turned red all the way into his ears. His face started swelling and he broke out in hives all around his face. I took him to the doctor because I knew someone had to see him this way. They had to know that this was not all in my imagination.

I was told that I needed to see a GI doctor. I was told that they would call me after calling the doctor to get us an appointment (so they could get me in sooner). After a week of waiting, I took matters into my own hands and made an appointment with an allergist. They told me the soonest they could get me in was two months away. I begged them to see me sooner. I was worried that my son was dying, but didn't really know that was my worry. It is difficult to explain.

Thankfully they called back not but minutes later. Someone had just called and cancelled their appointment for the next day. I know God was watching out for him. We came in, got the paperwork for the blood allergy test and left. We wanted a blood allergy test because it was more accurate than the pin prick on the back test (plus who wants to subject their baby to that kind of test where their back will itch and itch and they don't understand why they cannot scratch it, much less why someone keeps hurting them by pricking their back). Little did I know that it would take 4 weeks for the results to come back and during that time, our lives would change dramatically forever.