I had Samar’s appt today. to follow up on the 2nd blood test we did on the stuff he has been eating, stuff like arrowroot,rice, potatoes, sweet potato, tapioca flour,turkey, pork, beef. NK was suppose to go with me to this appt. The kids are on summer vacation and I didnt want to drag all 4. A neighbour kindly offered to keep the older 3. When I dropped them off, Samar started screaming that he wanted to go to the playdate. He kept screaming throughout the drive, “let me out stupid car seat Let me out stupid car seat”
He wouldnt come out of the van and went in the back row and sat there for 6 mins. Finally he needed to pee and so we rushed to the doctor’s office. There, he kept screaming his head and wouldnt come out of the bathroom. I was going to start bawling myself, even before seeing the doctor. Luckily, a nurse came and got him and offered him a movie.
Watching Max and Ruby
These past few days, his skin has been horrible. He has open sores on the corner of his mouth, under both eyes, the back of his knees, his arm joints. No matter how much antibiotic cream or lotion I douse him in, his skin is dry as the Sahara? He has been up at night, screaming it itches!
He hasn’t eaten any strawberries, corn(well unless the corn syrup that one find in almost everything) or applesauce. and yet his skin was so so bad.. The pollen count in my city was extremely high as well, so that could have been a factor.
Anyways, the doctor asked me, Am I going to cry again ? I said I will try not to. So he tested positive for rice, a 13.20..the rest of the things were negative. I said, what is he going to eat then? What am I going to feed him now? he has rice and rice pancakes almost everyday.
So the doctor gives me a list
- potato
- Honey
- pork
- Beef
- Turkey
- Tapioca
- Fish
- Clams
- Buckwheat-I googled and this is kuttu atta. I never even knew it
- Maple Syrup
- Berries except strawberries
- Oranges
- Applesauce but not apples
- Grapes and raisin
- Olive Oil
- Saffola Oil
- Canola Oil
- Spinach
- Broccoli
- Cabbage
- Cauliflower
- Squash
- Pumpkin
- his Special Neocate formula
- FORGOT TO ADD CHICKEN
And a daily multivitamin.he also wants me to implement a daily bleach bath. He said its been very successful with 2-3 of his patients whose skin is as bad as Samar’s. The reader that told me about Mimys ,He gave me another lotion similar to that. A prednisolone and an antibiotic to help his skin for now.
We do this diet for 2 weeks,along with his bleach baths. I go back and evaluate with him and we re-introduce one food at one time. Any food that got a value of less than 20 on the blood test(corn, apple,rice,strawberries to name a few )
I have decided that I need to go on this diet with him. I told the dr that and he said he highly recommended it because it will be easier for me than to figure out to what to feed him. My only exception would be milk(for my morning and evening chai). Am I insane? Maybe! Will I be able to do it? Maybe I would lose a bunch of weight and label this diet the Samar Diet and become rich?
The sad thing is I dont know how the other kids would feel about us restricting so many things.. I havent bought strawberries since 3 weeks. If he was an only child, my life would be much easier…but to balance the needs(wants) of the older 3 with his is tough. They already accuse me of favouring Samar more because I dont allow things he cannot eat in the house. Ice-cream,cookies, kettle corn amongst many more.
Sigh, lately all I seem to be doing is crying and whining.I keep telling myself, other parents have it worse than just not seeing their child eat strawberries. To suck it up and not be so dramatic about it and yet, even now I have tears in my eyes while composing this post. Me, the heartless bitch who would never cried. I NEVER CRIED>.Everyone in my household would be crying and I would be the strong one and now the slightest thing makes me cry.
*My tears have dried up.
S, I think I said it earlier and I’ll say it again. Samar has a really strong and sensible mommy in you. I can understand how overwhelming this is, so wish you and Samar the best of luck. I feel that the older kids will grow used to it, and then Samar will be old enough to not crave things they are eating. Or you could tell me I know nothing about kids
Anyway, big hugs to you. Stay strong!
PS: LOL@ Samar Diet
Me: The best thing to hope for is since I am doing all this, he would outgrow his allergies and I can use this as blackmail material.. when he disregards my feelings and listens to his wife instead.
Hehe. You’re a clown. And you’re watching too many Indian soaps
Me: oye I dont have any cable so no Indian soaps. I did watch Oye Lucky the other night.
I hope the bleach baths help him… Can he eat rotis made of wheat atta ??? That way he can eat roti sabzi/dal right
Me: Nope he is higly allergic to wheat. He can have all the alternative grains, like quinoa(which he hates), sorghum(is either jowar or ragi in Hindi), which he didnt like much as like. he cannot have any dhals or beans or lentils or green peas or green/french beans. They all are related to soy family
Hi ….
read ur post ,,, really touched …
Hope that all goes well and samar get to eat most of things ….
aside to that , spelling in the title should be ‘Aansu’ and not ‘aashu’ ….
Cheers,
Neha
Me: I knew I was spelling it wrong. Thanks!
Your reply to Neha is the right spirit!!
Calm down .. this too shall pass… I had read soemwhere that God tests only those who are strong enough… so relax. I’m sure that you all will come out of this smiling.. and then maybe years later you’ll look back at this crazy time in your lives and laugh
God bless all of you!
Me: Thanks!
Dear sraikh,
Hang in there… you need to ..:) especially if he listens to ur bahu later on then you need to remind him of this time…
best balance between nutrition and picky eaters.
this is just a cloud ..it will pass..
Look at it this way all of you can try various other diets or cuisines who know you might find an asaan formula
But it will be all right ..Hugs .. I feel if you browse through some food bloggers then you might get some good ideas…it is just that we are so used to rice and chappati that some times we forget that without these also there might be options …but yea for kids thoda R&D jyada hoga..
Good luck and take care…
Me: Yes..I need to research more, instead of surfing aimlessly.
I know it won’t comfort you any, but looking at your list it’s way better than my Malaysian friend’s list for her 2 children. They can’t eat meat or fish at all, for example.
You are strong and filled with love for your boy, you’ll come out victorious and stronger – and slimmer.
Take care,
S.
Me: Hoping for a slimmer me…I have a birthday party tomorrow. Let’s see whether I can resist the cake.
My heart goes out for you, Sraikh. I hope God grant you and Samar the strength to strive through this difficult period. You are a brave woman and this too shall pass. Love and hugs.
Oh my GOD sweetie I don’t know how u doing it big HUG. My little one has the same problem but thank GOD she is getting better. When she was 6 months she was at worst DR. told us when she turns 2 it will disappear. She is two month short of 2 and I see it is slowly going away. You know I stopped all medication about 1 years ago and it was the best thing I did for her even though her skin was the worst at that time. I just kept moisturizing all day and night even though I slept couple hours. We don’t know what she is allergic to and I have a feeling we will never find out. So we avoid all the process food, egg, and fish, and oat, avocado. Thankfully, she is not allergic to milk so she takes that. They did mention the bleach bath but I never tried. You won’t believe that we haven’t gone to the doctors about a year now except pediatrician because I gave up one them. We thought we know best about our child and thankfully we were able to figure out. They just do the trials on our precious child.
I could just say one thing my cousin son had it all over his body and they said he is allergic almost everything. When he turns two everything disappeared like magic. So there is hope in the future just hang in there. All the best.
Me: You know, from January till about May end/June.. his skin was excellent.everyone who saw him remarked on it. he didnt take any of his antihistamine or anything. Just regular baths and lotion and then wham I get hit with this. I was told for 90% of kids, the magical age is 2. Most of them outgrow it at that age. Apparently Samar is in the 10%.now I have been told between ages 5-7, we’ll see an improvement….hope and pray..
Poor Samar! It is so tough to have to change up the meals they’re used to, and we’re used to making! My Sweet Pea is nearly two and just developing food sensitivities – not allergies, but intolerances, which have similar reactions but different causes in the body. Like Samar, hers is so limited and that definitely makes it tough to have any variety! She’s so little that she doesn’t seem to miss things; Samar is big enough to understand and know what he’s missing. We all did the elimination diet together, and now I’ve gotten into the habit of making meals that are Sweet Pea friendly, and pulling out a portion to season for the rest of the family. You’ll get the hang of it!
Oh S! All I can send is lot of love, warmth and hugs for you. It must be a really difficult position to be in, but you seem to be faring just so well. I would have completely buckled. You are really really strong, and facing this really really well. You are one strong, gutsy loving mother and let no one ever convince you otherwise! Sending positive vibes your way!
Me: Thanks GM.
good idea you do it, i think you will feel better about it all and like you and samar are a team.
hang in there dear,
love
Me: We all had bacon for breaktfast today!
You know the days I feel I have it bad, i’ll look at this post and put my chin up. you inspire me totally! I would have been a nervous wreck, down in the dumps wallowing in self pity.
Kudos to you!
Me:rofl.. always a silver lining
Oh that is so sad. But then what choice have you got? Have you tried acupuncture/alternative remedies to treat his skin?
It’s good that you restrict foods around the house – the other kids may not like it – but they have to learn to support their little brother.
Oh god – this broke my heart! I can imagine how it must be for you…
I dont know what else to say except Keep the Faith and I’m sure he will outgrow it soon ….
Wishes and prayers for you all, babe.
Me: thank you!
Hey Sunita
I remember Samar in my prayers everyday. Im sure what the doctor is doing will slowly help Samar get his health back to normal and .Maybe once NK is back you can take the older 3 out for treats that Samar cant have right now. I had very very mild eczema when I was small and was recommended this Soap called Sebamed which did wonders for my skin. I stopped using it along the way because it was expensive but had the last couple of years always had dry ,itchy skin. It wasnt available freely in the U.S (only at few stores). Then last year they had a 1 week promotion at Costco (basically 3 200 ml bottles and 1 1000ml bottle) cost about 40 bucks at Costco during the Sebamed promotions.Otherwise 1 1000ml bottle is 40 bukcs on their website+shipping. They have 1week promotions at various Costco’s and you can email them which Costco they will be at next in your area…Do ask the Doc whether you can try this out…Sending lots of +ve vibes and prayers your way..
-Bini
Me: I use their lotion on him. I got it from Costco as well. I am not suppose to use any kind of soap on him so we just let him play with the water and now with the bleach, I cannot use soap or else it negates the bleach or some crap like that.
This is ao unfair that a little kid has to go through all this when he does not even understand it. Hang in there S. You are a strong mother and your kids will thank you for that.
Me: You know I always wonder if my firstborn had this issues, I would have gone and gotten my tubes tied after the first one. Plus I wouldnt be as confident, questioning docs and what not…
I was looking at the list of stuff he is allowed to have and some of my favourite veggies are on it, cauliflower, broccoli, squash. I cook these a lot and I thought of the ingredients I use and I think with minor tweaks they’d match Samar’s requirements. These websites are some that I use often:
http://www.101cookbooks.com/
http://simplyrecipes.com/
The first one has a lot of recipes that are dairy free and she uses a lot of alternative grains such as quinoa etc. She even has a recipe for cauliflower popcorn ( with bread crumbs but maybe you can skip them)
Hope that helps.
Me: ohh thanks for the links..I will look at them later tonight.
That list if things seems quite yumm to me. The ‘supernmom’ will come up with some amazing combos/recipes, I know!
It sure hurts…but as always, this shall pass soon.
BIG Tight {{Hug}} to you dear…chin up.
Me: Arhmm.. I am still waiting for the invite you know!
You are doing a great job S !! Pls continue doing whatever you are already doing …
Get creative with the stuff he can eat … you know something on the likes of may be Upma with buckwheat and with Ragi we make something called “Ragi Rotti” … I can send you the recipe if you need.
I once had a co-passenger in a flight who was allergic to gluten. She had got all her eating stuff herself (for an international flight!) and seriously, her stuff looked tastier than what we were served.
I think with some research, u can come up with recipes that even the other 3 kids will fight to eat. This is one site like that: http://glutenfreegoddess.blogspot.com (assuming Samar is allergic to gluten foods like wheat)
Like your outfit posts, u can post and share with us the recipes u come up with, with minimum resources
Other than that, take care!
Me:Your comment went into spam! I will see what recipes I come up.
I recently came across a personal blog in which the mom posted a magic cure for eczema called ” bag balm” which is used on cows. When I was reading about your son’s eczema, I thought about this blog and searched for it.
Here is the link, scroll down to find the post.
http://fivecrookedhalos.blogspot.com/search?updated-max=2010-06-14T14%3A30%3A00-05%3A00&max-results=15#uds-search-results
Me: Thank you for searching that for me!
Bag Balm is a very old remedy for dryness – It’s been around for ages – But be warned, it is a lanolin product – not sure if Samar is allergic to lanolin. I used bag balm when I was b/f my kids – it works far better than the nipple creams for humans
Me: I think I used it too.. udder cream or something it was called if I remember right.
Sounds like Samar’s allergy news is both better and worse than expected. One thing I have read/heard – with food allergies, you have to make sure you rotate the foods he *can* eat, else he risks developing allergies to those as well – I suspect that’s what happened with the rice…you mentioned that he disliked quinoa – but you may need to figure out how to make meals that rotate all the ingredients he can eat to about once a week – that seems to be general wisdom…
Me:See when he was 1 yr or so, he was placed ona restricted diet of applesauce, bananas and one other fruit., At that time, he didnt know better so he didnt fight ot was sad or maybe I was in denial…but the allergist said its okay if he just has those food day in day out. His special formula, he has been on it since infancy and the first thing in it is corn syrup.
As for the older kids, IMHO, the girls are old enough to understand the seriousness of Samar’s allergies, and are old enough to be allowed to have their treats privately – perhaps in their room. Neil may need a few more years…
Good Luck – I agree that this is very very hard…esp on you….since you *know* things can be different…
M
Me: Parenting sucks and then you grow old and you die.Hows that thought for a happy Sunday!
Hi S, it’s been some time since I came by here. I’m really sorry that you have so many things happening one after the other. Stay strong, you have a great attitude and I do hope things get better for you and your family.
I second the person who referred the 101 cookbooks site to you, the author has some very creative experiments with alternate grains. I’ve cooked many of her recipes and they come out really well. Another person you can look up is Ellie Krieger on FoodNetwork.com.
So, just to let you know it isn’t hopeless. Hang in there and I hope Samar overcomes all his allergies soon!!
All I can say is Samar is lucky to have a mom like you. If it was a mom like me, I tell you home would be hell coz I would be the first one to give up. You are one helluva mom and I really really admire you for that.
Kisses to the little boy…u know whenever I see his pic, it makes me smile bcoz he has such a positive vibe.
Hang in there S..it breaks my heart to just read about it.
You mentioned that he was fine last few months – that was winter months there right ? I have observed with my daughter that her eczema gets worse in summer too. I know u r getting lots of advise/suggestions and if you don’t want mine please do tell me shut up…but…have you tried ‘wet wraps’ for him ? helped my daughter a lot when her skin was bleeding and her eczema sores weeping. It helped her to sleep otherwise the itch wouldn’t let her sleep. Its winter here now and her eczema is a whole lot better and every time I even see a hint of dry skin ( even after applying moisturiser ) I put this special cream on her that one doctor gave her. THat’s the only cream that helps her.
Also, like the other commentor said, go with your gut feeling too instead of completely depending on the blood test results. One of the doctors gave me that long list of foods to avoid too for my kids, but after some time it became impossible to feed them with such limited choices. So I started introducing them in small amounts ( for eg. instead of using two tomatoes in the daal, I would use only one !) and her skin has never been as bad as it got last summer ( touch wood! ). THe other thing I have done is instead of avoiding the whole list of food, I have started avoiding processed/convenience/canned food. They have an unbelievable amount of allergens added to them.
Having said that, every child is unique, so may be you can try your own set of combination out of so many suggestions you are getting along with the test results and see how it goes from there..see if rice made him itchy/scratchy before or not, for all you know it could be weather ! No doc said that to me, but along with some fruits like citrus, I know the weather plays some part in my daughter’s eczema..
Lots and lots of tight hugs to you S. I admire the way you are staying so strong…
Big hugs to Samar too. Lets hope and pray that he will grow out of these allergies as he grows up.
Take care
Me: So many kids suffering. I am so glad I blog and have this platform to get help and know its not me that causing my child to break out in hives. I think we tried wet wraps when he was much younger and he screamed and screamed. Now maybe he is older, he would tolerate it better. He has improved a bit since the past 2 days, I know its because of the medication. But the sores are drying up. I will let you know what happens 2 weeks from now>
ughh…i typed up this long reply…and didn’t realize i didn’t put in my email and then the error message came up and I lost it all….BOOO! lol
This is what our allergist told my older daughter – eat everything. Her list of allergies was extensively long….and if she had to change her ways being that she was entering the teenage era….she would have a tougher time to break her delightful habits! She would hive all over her face and her eyelids…it wasn’t everytime, but it was sporadic. The allergist said…if your throat isn’t closing up – then continue to eat it. and if you think about this…you can get allergy shots so you can build up the immunity – why not just eat a little bit of something everyday to build up your immunity right?
I’m allergic to all the good drugs (unfortunately)…aspirin, ibuprofren, pain killers… so I can’t take crap! Only tylenol and robitussin products and I’m immune to them.
Both my girls have Eczema and the dr’s recommended dove BAR soap. Must be the bar soap and not the liquid soap. My esthetician also said dove bar soap is just magical! ??? Isabella has it all over her body – shoulders, arms, legs, torso and the dr. advised us to only take a bath twice a week and that WATER is really BAD for their skin when they have eczema! You might want to think about this….and try it. It has helped Isabella tremendously (although I love smelling her when she is freshly bathed)! The teenager doesn’t have a lot of issues because teenagers have issues showering on a daily basis…..hahaha just kidding!
Me: Hmm see I was told daily baths because the moisture helps. Not to use soap(or use cetaphil) and then apply lotion as soon as he is out of the tub without drying him off..
Asheley has it badly on her hands – to the point where it would chafe and bleed. She has to put amlactin or hydrocortizone on her hands and wear gloves to sleep everynight.
I never had allergies until I moved to the Peninsula – now I have seasonal allergies and I’m allergic to all the heritage trees on our property…GO FIGURE! Perhaps Samar is allergic to the BAY AREA!
I can only share my experience with you….and also let you know that NOT ALL DOCTOR’S are RIGHT! I’ve come across a few that have misguided me and have forced me to make health decisions on my own.
Me: I know… But sometimes, I am at my wit’s end and desperate and will to try what the doc says.
The older 3 may accuse you now but they will understand your pain soon. I just know it.
The list sounds good and also healthy. Good luck and you are indeed super mom. Big hug.
Wishing you good luck. By gods grace samar will be all better very soon…Best Wishes…
That list of things he can eat is really not too bad. Elimination diets are a pain but well worth it.
Perhaps you can give the other kids foods that Samar is not allowed to eat, for school snack and school lunch. My son gets Pbj’s and shrimp pasta and stuff that daughter is not allowed, in his snack and lunch boxes. The rule is that he has to wash his hands and change clothes as soon as he comes home from school (before he touches anything else). The lunch box is washed by me right away. He gets his fill of “forbidden” things away from the house and we dont have to stock the forbidden foods in the refrigerator for all to see and crave.
Can you tell me about this bleach bath thing? how much bleach?
Is Samar swimming this summer? Daughters eczema is always worse because of the chlorinated water. I do put a film of petroleom jelly (not aquaphor) on her joints before she gets into the pool.
huggs S! YOU are such a rock star and here i shed tears if Cub doesnt eat his food! gah!
I liked what M said about letting the older girls enjoy their treats in privacy. no harm in that, is there?!
and i am gonna keep Samar and you n my prayers always! i am sure thing will only get better from here on!
love ya for what you are!
cheers!
All the best to you and Samar. It’s tough, but you are tougher.
Hello,
I keep thinking about what you and Samar face whenever I have dark moments. I can only pray that his allergies ease slowly and he gets to enjoy more. Please try buckwheat for making pancakes, porridge etc. My friend is from Ukraine and they use it quite often in their cooking. some of the links given above for recipes are quite good and maybe you have already browsed them. Does Samar object to quinoa texture or taste? I saw a recipe for upma with quinoa, maybe disguising it that way might help. I hope I could say more or give helpful suggestions but have not got many, so I can only hope and pray that you continue with courage and things ease towards better days.
Good luck!
Me: You know I did try buckwheat from the Indian store. I made him a pancake type thing and hiw whole face got red. I dont know whether it’s from cross contamination(the product info did state that it was processed in facility that has nuts and blah) or whether its not suitable for him. Big hugs to you and you situation as well.
oh..:(..i thought buckwheat is not even from cereal family its from rhubarb or something like that. so, i thought you might have success with that. I hope you find enough alternatives to try. At least having options helps doesn’t it? Good luck to you and hope you enjoy your trip. Things are looking better in our case, he might just get away with wearing a patch instead of going through surgery again. Thank you for your emotional support.
I can understand how overwhelmed you are. I’m struggling with E’s eczema and end up crying more often then not!
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