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DS is sensative to EVERYTHING!!! What next??

2K views 28 replies 8 participants last post by  mamafish9 
#1 ·
This will be quick since I have to elave for work in a few minutes, but I'm at my wit's end and stressed beyond belief about this. DS was diagnosed with FPIES at age 1, with a very long list of food sensativities. Looking back, I was never convinced that FPIES was an accurate diagnosis as he never had violent vomiting....just a bad rash all over his face and horrible reflux, red anus, etc. RAST showed no IgE allergies. We've been seeing an allergy specialist at the children's hospital here, and after a year and a half of seeing her and DS being down to only 3 foods right now she has decided that apparently all of the testing we have done on him and her dx was not accurate. Time to dig deeper and find out what's causing all of this. His list of NO foods is tremendous, and he recently lost a whole bunch of foods he was eating. His trend is that he does okay with some foods for a period of time and then builds up an intolerance to them. Some he reacts to quickly and others slowly. Once he reacts to it, if we continue giving it to him, his reactions come on quicker and more fierce. She's wanting me to go back to GI specialist for a full re-eval. I don't even know what to ask him at this point other than to beg and cry to help my son!!


We tried NAET with absolutely no success, and some homeopathics with no success.

He drinks about 8oz. of water kefir a day (24 hour brew) and is on a multivitamin. I know the vitamins are not enough for him at this point and we are awaiting blood tests to check his nutrition levels. I don't know what else to do....he basically can't eat any proteins, no dark leafy greens, no vegetables at all really....he eats spelt, grapes, watermelon and that's really it right now because he keeps losing foods. I'm wondering about metabolic diseases and the dr's are sort of blowing me off and pushing me off on one another. I just don't know anymore what to ask for or demand for his health!! HELP....any suggestions of what to do!!
 
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#2 ·
Oh mama, my DS has a lot of allergies/intolerances but not to that level.


Have you tried the FPIES support on http://www.kidswithfoodallergies.org/?

The Special Needs Parenting forum here at MDC has been discussing metabolic issues:

http://www.mothering.com/discussions....php?t=1112233

http://www.mothering.com/discussions...d.php?t=734501

I can tell you that water kefir never did DS any good for gut flora imbalance, we had to find the right probiotic supplement and then had major improvement.

We are investigating thyroid problems right now as he has a lot of symptoms of hypoT (Frequent respiratory infections and recurrent croup, Cold intolerance at the least bit of temperature change, cold extremities: hands, feet, ears, Lanugo, Calculus on teeth, Reduced growth, eczema, low body temps, food intolerances and anaphylactic allergies)and a few blood test irregularities.

How is your DS doing on the foods and vitamins he is eating now? Is he at baseline?
 
#3 ·
I'm curious, with that many sensitivities, how he is able to tolerate a multivitamin?? We haven't found one yet that DD can tolerate because of the soy and corn derivatives (and because she reacts to calcium as well.)

I'm also curious if he is at baseline on those particular foods.

When was the last time he had IgE testing? If it's been a while, I would recommend doing it again- and doing a SPT rather than a RAST (or in addition to.) All of DD's initial tests came back with nothing. They didn't start showing any positives until she was about 18 months, and then every test since then we've gotten more. Now her list of IgE's is almost as big as her list of intolerances. Have you done any non-IgE testing (ELISA, ALCAT)?

Big hugs mama!
 
#4 ·
His IgE testing was when he was around 9 months old. We also did some spt testing at that time and all were negative. The majority of his reactions have been delayed reactions and we did patch testing on them instead for that reason. I also did ALCAT testing on him, but it appeared to be horribly inaccurate for him. He did not show up with many sensativities on it at all, and many of the deemed safe foods he had shown bad reactions to in the past. The dr. did suggest that they may really be IGE allergies then. I will say the foods that showed reactive on the ALCAT he is indeed sensative to, but we seemed to have alot of false negatives on it.

unfortunately, he is NOT at baseline right now which means that he has in fact become sensative to something that he is currently eating. But, with such a limited diet, I can't afford to pull anything right now until I find some replacement foods. He was eating strawberries too, and was doing okay with them and I think that might be my current culprit. I pulled it yesterday and will see if we see any improvement in the next couple of days.

Thank goodness he seems to tolerate his vitamins okay still, we are using NanoVM from solace nutrition. It's supposed to be a complete multivitamin, but I know that it's not enough for him.

I'm so frustrated because the dr's look at him and say "he looks great" because he's chubby and is growing. Well, he's chubby because all he is eating is spelt, and he eats a TON of whatever I give him in order for him to get enough calories, etc. There is absolutely nothing healthy about his diet, and it seems like they want to wait until he can't eat anything and is in the hospital on IV nutrition before they do anything. I'm not willing to wait that long!!

I haven't been able to find a probiotic that he can tolerate because if they were cultured in soy or dairy he reacts horribly to them! He does well on the water kefir, and I try to give him as much as possible figuring it's better than nothing at all in that category!
 
#5 ·
Oh my....I don't have any advice, I'm going through a tough time myself with DS, but I wanted to send you my love and big hugs...I'm sure you will find great help and support here, I know I have. I will be checking in to see if you how you are getting along. Best wishes to you and your little one.
xxx
 
#6 ·
Thank you...support is what I need the most right now, if for nothing else to keep me sane and to know that I'm not alone! DH is on active military duty and is gone for a year, so I am going through this pretty much alone right now. I just want to get down to the bottom of this and find out what's causing it.

Saw his pedi again today and now we are headed back to the GI specialist before going any further for a full re-eval. He's obviously not following the typical trend of an MFPI kiddo as they typically gradually grow more tolerant of foods and he is not. Matter of fact, I think he's getting worse. I'm just feeling so desperate right now for answers and solutions to help my baby, and everyone is just taking their sweet time with all of this.
 
#7 ·
Quote:

Originally Posted by rhesp1212 View Post
I'm just feeling so desperate right now for answers and solutions to help my baby, and everyone is just taking their sweet time with all of this.
I totally feel you on this. DD will be 3yo in a couple weeks, and doctors are still throwing up their arms because they just have no clue. I'm still hearing, "oh, she's probably grow out of some of these soon." Yeah, first it was "she'll grow out of it by 1 year" then it was 2 years, and I just read something that said most kids outgrow dairy allergies by 3yo. Haha. Well, we have 2 weeks.
I'm still waiting for someone to have a clue as to why DD keeps developing new allergies, but I'm not sure I'm going to find any.
 
#8 ·
yea, my favorite is "well, he looks great!"....yea, he's chunky because I have busted my butt making sure he's eating things that he can tolerate (and large amounts of them) and all he's eating are carbs and sugar right now. I always want to say "you'd be fat if you ate all that too". That doesn't mean he's healthy or okay!

I told my husband today that I now know why you hear about stories when people go balistic and whip out guns on dr's etc. to get something done. Don't worry, I'm not that kind of person....but I can relate at this point!! It's maddening sometimes!

Changingseasons- that's our problem, they don't know why he keeps developing sensativities to foods over time and why he won't regain those that he's been off of for 18 months already. His reactions are getting faster and more intense the more I feed him something he is sensative to. That said....no one has yet to do more testing, bloodwork, stool testing to investigate it futher. Which is what I'm fighting for!! I'm grateful that none of his reactions are anaphlactic at this point! But, that's no reason to drag your feet.
 
#9 ·
Hugs mama!

Your son sounds like me. I am good with a food, eat it for a few days and then it is out for months or longer. My food list is getting shorter and shorter. I found a naturopath recently that did some acupunture type work to "calm my system from reacting to so many things".
It has really worked and I am eating more food without reaction.

I don't understand dr's sometimes. With my dd's rashes, I was told just to forever put cortizone cream on it and quit looking at food allergies.
 
#10 ·
yea, my pedi never ever mentioned food sensativities with his rashes. She just kept saying it was drool or the heat. When I told her I thought it was related to food she just shrugged me off and said "really?" like she didn't believe me at all. It wasn't until I pushed to go see an allergy specialist and the dr. sent her a note with the results that she started taking me seriously.

Oh, and by the way, he's 2 and still drools because he has low tone in his mouth....probably from his diet!

I really have considered changing pediatricians, but it's so hard starting over with someone new when your child has a medical record the size of a dictionary!
 
#11 ·
For the rashes have you considered environmental contact? My Dd is allergic to polyester and breaks out with a terrible rash when she comes in contact with it. We figured this out at 6 weeks when her rash was so bad it looked like chemical burns on her body. The Dr. said it was contact dermatitis so we changed detergents, lotions etc. until one day her face was totally clear and we were leaving the house I wiped her face with a spit rag and when we got to the car her face was covered in this rash. I ran upstairs and the cloth I used was 100% polyester. Once we figured that one out she only gets rashes if she comes in contact with wet polyester or she is wet and touches polyester.

Now if her food issues were that easy we would be golden.
 
#12 ·
rhesp1212; I don't know what else to do....he basically can't eat any proteins said:
I'm so sorry to hear about what you're going through! I was feeling just so overwhelmed by ds2's needs a while back and his situation is not half as bad as your son.

We had gone to 7 different doctors, including 2 TCM doctors and an allergist and 2 skin specialists. 7 doctors, 7 different diagnosis, and it took some trial and error and observations before we could see which doctor was correct. The thing about skin and digestive system is that it can be so many different things with overlapping symptons.

Anyway, I think it may be worth getting a second opinion, or try an alternative doctor. Someone out there gotta know what it is!

beadmama,
that's a fine piece of detective work you did!
 
#13 ·
Quote:

Originally Posted by rhesp1212 View Post
Changingseasons- that's our problem, they don't know why he keeps developing sensativities to foods over time and why he won't regain those that he's been off of for 18 months already. His reactions are getting faster and more intense the more I feed him something he is sensative to.
DS2 was like that. His list just started growing longer and faster from age 2. Most of the conventional doctors did not pay much attention to that, but the TMC doctors seemed to understand right away about the delayed/accumulated reactions. In fact once they had a look at him and took his pulse, they would rattle off a list of things that he shouldn't eat and most of the food would be what he had a reaction to. They gave us a list of food to avoid and that seemed to halt the deterioration. DS2's problem was more skin, plus weak digestion (he had chronic diarrheao and throws up easily, but nothing like projectile vomitting.) The first doctor gave us a list of food to avoid for his type of skin problems. The second doctor gave us a list of food to avoid for his constitution, including weak digestion. Apparently huge quantities of fruits are a big no-no in TMC medicine for weak digestion, it will just aggravate the situation. After reading up, I noticed that the two lists of food coincided with high-salicylate food, as well as food to avoid on an anti-yeast diet which can impact on digestion.

Instead we focus on warm meat-based broth and well-cooked vegetables (no tomatoes or mushrooms), while still keeping off the top 8, now we are starting to add small quantities of fruits back into his diet and he's doing well now, diet/digestion wise.
 
#14 ·
Forgive me, but what is a TMC doctor?? I'm not familiar with that one. We did try an alternative med. dr. who did applied kenisiology....it was a total and complete waste of money. Stuff he said was safe for him, he had some of his worst reactions to. We saw absolutely no results. i am going to make an appointment with a naturopath nearby to discuss my son with as well.

I have considered contact stuff, but haven't been able to find any type of pattern with it. I have also considered environmental allergies, as I'm allergic to everything airborne. But, he gets a rash AND his reflux flares up, and has GI problems. I don't think that would cause that. If it were only the rash, I would push forward with more allergy testing for environmental stuff. But, that was a very good point to bring up. Thank you for that!
 
#16 ·
Oh yikes, yes, I mean TCM, sorry.
The second physician did say that acupunture would speed up the healing but ds2 was too young for it.
We were pretty desperate - and I think we got some useful dietary advice. We did not continue with it because ds2 would not down the medication.

Re: rash and reflux. In our case, the link between digestion and skin was there, but not necessarily as straightforward as I had thought.
According to the TCM physician, ds2 has dampness (which I suspect may be a term for candidas in the system because the management guidelines for both sounded similar) and weak digestion, and the latter aggravates the former. Both physicians were not surprised by the extensive list of food triggers - apparently some are known to aggravate the "dampness", some will weaken digestion, while the rest will aggravate skin inflammation. According to them, I'm feeding him all wrong and resulting in a negative cycle.

Our current doctor, a dermatologist, says it's fungal infection, and it can be exarcebated or triggered off by food, and the advice from the other doctors are making the fungus more entrenched and widespread. Dustmite (as tested by allergist) may not a major concern.

Now we essentially follow the dietary advice of the TCM doctors, plus avoiding the top allegens, and he's not had anymore episode of vomitting since early this year. His diarrheao has stopped, and he finally has some color in his cheeks.

For his skin, we follow the management guidelines from our current doctor, which was in total opposite of all the other doctors. In fact he was horrified by the advice from the allergist.

So look around! Don't be put off by his medical files. The best doctor is the one who actually look at your child and ask questions about HIM, not the one with preconceived notions.
 
#17 ·
small update- went to the GI specialist today and he agreed that he's not following the profile of just a protein intolerance anymore. He said it's very rare to come across a kid who is reacting to everything and that makes it tricky. He is running a bunch of bloodwork- celiac's panel, metabolic panel, CBC and we are also going to do an endoscopy and sigmoidoscopy in October. He had one of those done a year ago that just showed inflammation, which they felt was consistant with allergies or the MFPI. He wants to repeat it to compare to what they found last time, and see if anything new is going on, etc. So, atleast we're moving forward with SOMETHING. Will wait until we get the bloodwork and go from there.
 
#19 ·
Took him to MY allergy dr. today because the poor kid has been miserable for 3 weeks with a runny nose, cough and recently red watery eyes. Pedi wanted to put him on antibiotics even though he hasn't had any fever and all mucus is clear....uh, I don't think so. Anyways...he did a rhino probe and said he has TONS of allergies. Great, lets add seasonal environmental allergies on top of everything else. I guess he inherited that part from me though...I'm allergic to everything airborne! Poor baby......going to do allergy testing for environmentals next month too on top of all the GI stuff. Atleast we're moving foward with things!
 
#20 ·
very very interesting.....the allergy dr. put him on steroids for 4 days for his horrible sinus allergies to help get them under control. During that time, DS's stools were completely normal, verging on constipation....stools were fully formed, no mucus, rash on his face completely went away. Since stopping the steroids, he is already getting mucus in his stools again, and they are getting looser by the day. What could that mean other than he obviously had gut inflammation?? So far this week he hasn't had any food reactions either, but I'm sure the steroids have helped mask that a bit and prevent them from happening. BUT, I can't keep him on steroids!!
 
#21 ·
There are some supplements that are anti-inflammatory and anti-histamine, and might decrease his reactions with less side long term issues than steroids.

Some ideas to start: methyl B12 and mthf folate & folinic acid (200mcg each daily of the last two) to support methylation. Seasonal allergies often mean methylation function is poor.

Vitamin C 2000mg/day to lower blood histamine levels.

Inflammation calming supps - grapeseed extract is a nice gentle one to start with. Pycnogenol & curcumin can also be helpful.
 
#22 ·
mammafish- I have read lots of people supping with methyl B12...I would love to try it, but the problem I have is that I haven't been able to find a supplement that doesn't have some sort of ingredient in it that he has a reaction to. Although maybe now that he has done the round of steroids and the gut inflammation is down he may be better able to tolerate it. I most definitely will not put him on steroids long term....no way!! Too many side effects for sure! The grapeseed sounds good too, but he recently became extremely sensative to grapes....but I suppose I could try and it and see what happens.

Someone at work gave me a number to a really good naturopath too, and I think i'm going to call her and set up an appointment for him.

GI called back and said that all of his bloodwork looked good (no celiac's thank goodness).
 
#23 ·
Quote:

Originally Posted by rhesp1212 View Post
mammafish- I have read lots of people supping with methyl B12...I would love to try it, but the problem I have is that I haven't been able to find a supplement that doesn't have some sort of ingredient in it that he has a reaction to.
We have that same problem. DD is now tolerating the vitamin D that I have now, so that's exciting! (I use the Pure Encapsulations capsules, and just dump some on her food.) Speaking of- have you had his D tested? DD was at 11 when we first tested her, which could definitely be contributing to her messed up immune system.
 
#24 ·
Quote:

Originally Posted by rhesp1212 View Post
mammafish- I have read lots of people supping with methyl B12...I would love to try it, but the problem I have is that I haven't been able to find a supplement that doesn't have some sort of ingredient in it that he has a reaction to. Although maybe now that he has done the round of steroids and the gut inflammation is down he may be better able to tolerate it. I most definitely will not put him on steroids long term....no way!! Too many side effects for sure! The grapeseed sounds good too, but he recently became extremely sensative to grapes....but I suppose I could try and it and see what happens.

Someone at work gave me a number to a really good naturopath too, and I think i'm going to call her and set up an appointment for him.

GI called back and said that all of his bloodwork looked good (no celiac's thank goodness).
I know a number of kids who do fine with grapeseed extract who are sensitive to grapes - no guarantees, but a possibility. Have you checked out the B12 at holisticheal.com - would these drops work? (Nuts, I see they have citric acid now, didn't used to).

You could also contact a compounding pharmacy - they should be able to compound methyl B12 for you (they do it for methyl B12 shots, so guessing they could do it for oral as well). Straight methyl B12 tastes fine, so it would just be a matter of getting it in a stable base, and they may have some ideas for you. Or you could try methyl B12 shots (they are a very small needle, lots of people do it while their kiddos sleep).
 
#25 ·
He did have his vitamin D level checked and dr. said it was okay, but I will call and find out what the actual number was.

Mammafish- wouldn't I need a prescription to get something compounded like that? How much methyl B12 should I be giving him?? He's about 30 pounds at 2 years old. Do you know if there is a risk of giving too much, or do they just pee out the extra that their body doesn't need? I'm always afraid of supps. that aren't from a dr. because I have no idea how much or the consequences of giving too much!
 
#26 ·
Too much methyl B12 would make him crazy for a bit, but it's temporary (a few hours), then he'd pee it out. The idea is to get some form you can control the dose, and then start slowly (500-1,000mcg at a time). However, if he has histamine issues, the histamines will gobble methyl groups, so he may tolerate a huge amount (and see large improvement in his histamine related issues).

You may need a prescription, but in this case, it could be a really important supp for your son, so worth pursuing. (Can naturopaths write rx's where you are?)
 
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