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.