JAKOB - new allergist

boyohboyohboy wrote: we took Jakob to a new allergist this past week. we had kinda just stopped seeing the dr's and were trying to work thru these food issues on our own. i felt ok doing that since he is steadily gaining weight. but if i am totally honest, i was in denial of how bad his allergies are, and just was waiting for him to out grow them. but when i started doing the vax research and reading about kids, that sounded like jake i realized that it was time to step up and take care of him. so finally we got into a childrens hosp and met a dr who seemed nice. he said after hearing a brief description of what has been going on with jake for the last two years, that he has asthma, that this night time coughing isnt just reflux but also asthma. so he wanted to start him on an inhalor and a spacer. he also tested him for 28 foods on his fore arms. the skin tests, showed only a pos reaction to eggs. before he tested pos. for egg, wheat, milk, soy, and peanut..not this time. and he told us that the patch testing would be next and that would tell us what foods when built up in his system would cause a reaction...thats going to start in dec.
so i thought he seemed really good, and he spent 3 hours with us.
so why do i feel so defeated already?
well, jake is 2 there is no way he wants to do the inhalor and spacer, when i get near him he starts fussing and getting made and wont let me put it to his face.
then i realized after reading some papers that he shouldnt have been on any anti histamine for one week before the skin testing was done, he was on atarax the day the test was done..so now i wonder how that affected the test, and what else he is still allergic to.
also during the appt, he had such a terrible poop accident, that i had to throw away the pants he had on there at the office.
he diagnosed him with enterocolitis due to the constant exposure to the allergens.

he asked us to stop the atarax and start him on foods like potatoes, wheat, all meats, and legumes, and see how he does.
well he was off the atarax two days and he started to itch, like his skin is crawling with bugs again..and he isnt sleeping hasnt slept in two days now. so neither have i. i finally put him back on the meds this am. he just doesnt seem to be handling it well. i realize that there might be a withdrawal time, but i cant see him like that. and i dont know if its the foods we are giving him or not.

its just so hard to deal with this, but then when i watched sabrina's movie i thought how can i be so selfish, if i think its hard what does jake think?

lovemy2 replied: I am sorry Stacey - it seems very overwhelming and difficult since you can't seem to find one person/MD to give you the right advice....I wish I knew what to tell you except to give some

boyohboyohboy replied: thanks christine. i just look at jakob and he seems so happy sometimes, i just want him to be normal and enjoy food and feel good. most of the time he isnt happy, and like the dr said so far he has spent his entire life in pain and not only that its becoming more and more apparent that he has the SID, its almost to the point where i jsut dont know where or how to touch him anymore. i just want to hug him and have him hug me back..
but most times he just pushes us away.
its sad and so heartbreaking

PrairieMom replied: I am so sorry, I can't imagine how hard this has to be for your family. I hope they get him figured out soon. You re at least on the right track. I don't have much advice for allergies, but I may be able to help with the asthma stuff. What kind of inhaler did they put him on?

mysweetpeasWil&Wes replied: I don't have any advice Stacy, but just wanted to let you know that we're here for you. I know how overwhelmed you are.

amynicole21 replied: That sounds so frustrating. I'm so sorry.

boyohboyohboy replied: tara i was going to pm you, but i feel like i always bother you about work stuff on your time off!
he is on flovent with a spacer, and she said to push it and then ask him to take 6 breaths, now for a 2 yr old i might as well be asking him to algerbra!
i tried to do it while he was watching tv, and i tried bribes, i tried it on my, i tried it just the mask with out the med..
any ideas?
i am thinking of calling and asking for a nebulizer instead. at least with caleb when he was young if he fought it we held it there and he cried but he got the meds as he breathed in.
he wants this done two times a day.

boyohboyohboy replied: i felt like i had to come back here and write that jake is such a good kid, and he is loving. i know he has come such a long way, and we dont have it as bad as some of the families do..
i guess its just selfish on my part to want him to be a specific way, when he is who is he. and thats one heck of a kid! and i couldnt love him more.

PrairieMom replied:
Flovent doesn't come in a neb, but you could use pulmicort instead, its a steroid too. I think asking for nebs instead is a good idea. Making a 2 year old do a inhaler is sometimes asking a bit much.

lovemy2 replied:
Oh Stacey - no one doubts he is a wonderful, loving child and that you are doing a great job with him - sometimes in my opinion being that we are with our kids all the time - especially with SAHM we tend to overanalyze our kids - and maybe things aren't as bad as you may think? I am not really sure to be honest but if he was doing well what made you think that more was wrong - just what you have read, etc. ? And to be honest - I don't even know what SID is???

luvmykids replied:
Colt is the only one of mine who has asthma and he couldn't deal with the inhaler/spacer until much older, more like four, and late into four at that. We HAD to use the neb, or forget it. I even had a portable one for the car because I was scared to death he'd have an attack and not be able to get the inhaler in him. We have pulmacort as well.

I'm so sorry, I don't have any advice, it's clear how much you love Jakob as he is, you're a normal mom for wishing that none of you had to deal with this

boyohboyohboy replied:
I do sometimes hope that i am more over critical and that things are not as bad as they are, i think that is why i was in denial for so long..jake isnt able to eat really anything, he tries too, he grabs food off the table and puts it in his mouth and chews it and then spits it on the table or on the floor, he rarely swallows it, and if he does, most of what he eats causes diarrhea or more times then not he vomits. he wants to eat like caleb, the chicken nuggets, apple juice, milk, cheese, but when he eats any of those things he gets sick, and i dont know exactly how he feels since he cant tell me, but he wont attempt to eat when he is having one of his "attacks" as we call it. he doesnt grab food, he also is cranky and cries all the time, he just sits and watchs tv doesnt play, he gets bad gas, and stomach cramps that you can hear, and terrible diarrhea that leaves blisters on his bum. and those attacks can last 4-6 weeks sometimes, and when its over he starts to pick at food again. he hasnt eaten a real meal yet.
he has been doing this all along, and taking 4-6 cans of the soy pediatric drink a day and thru the night, he normally sleeps and wakes up about every 4-5 hours for a drink, because he is hungry the drink doesnt fill him enough to go all night.
when i started to read about the vax, about the open gut, and the reactions some kids had, or what they seemed liked after the shots, they sounded like jake, the ones who reacted bad, some of his behaviors too. he will throw over the board temper tantrums, not just those of a two yr old, but ones where he runs his head into the tv screen over and over even though its hurting him. and screams so loud..unconsolable.
the SID sensory integrative disorder, i tried to ignore all alone. he doesnt like soft touch, you can tell that a carass makes his skin crawl, he needs firm almost hard touchs. he prefers a pat on the back to a rub.
he hates to wear shoes or socks, and ribbed elastic pants are out, to the point if you put these on him, he will pull and pull and scream and act like they have acid on them. get sweaty, and red, and just over the top.
and he doesnt like to cuddle ever, he just isnt like the other of my two kids.
or any kids i have known.
the drs we have seen all say something different. and none of my drs will talk about SID. only our therapist did. he also had an aversion to anything oral, he didnt want to put food or tooth brush in his mouth, he never accepted a bottle.
he never liked to be rocked and was always inconsolable.
but jakob has the best sense of humor, i never knew a kid could be sarcastic at such a young age but he is. and a prankster.
i just cant imagine being in pain every day of your life, and the days of pain that arent as bad as others,but still pain are all you have to call your normal days.
i just wish i hadnt shut it out for so long.
i mean how do you deal with a kid who is allergic to everything.
i guess you keep looking for help and i failed him there.
but i am trying now, and just venting sometimes helps.

msoulz replied: Aw Stacy, I am so sorry your enthusiasm for the new theories is gone. All I can do is send you this . I think you have held it together so well through all of this! I would have been medicated by now for sure. You are a great mom! You will get the answers.

lovemy2 replied: Well first off Stacey - vent away - that is why we are here - second of all when you are done venting please pat yourself on the back - you are NOT ignoring what is going on with him - you unfortunately have not yet found the professionals who can help guide you to a place that will get Jakob on the right track - have you gone through your school district and early intervention? I know my friend here who has the exact same issues with her son started there and then had an independent evaluation done through another agency - I know she had to badger adn badger and keep going back and switch peds, etc. just to finally find one who would listen to her and who was up enough on all of these new issues - SID, etc. that these poor kids these days face - it is so sad what our children have been and are exposed to in their little lives - I have another friend who BOTH her kids are on the autism spectrum - her mother maintains that it is HER (meaning our parents) generation who has passed all these things on - an interesting perspective if you ask me....anyway - if you haven't already - get in touch with your school district - see where they direct you - and IMO research or keep researching experts in your area that deal with SID - it is so prevelant now that there has to be a ped or some professional somewhere hopefully close that can help you -

Keep your head up though you are doing a wonderful job by your children - just by being aware that there is an issue - your a good Momma and your kids are lucky to have you...I am sure it is hard to always keep your chin up and you are entitled to "freak out" once in awhile

DansMom replied: Stacey, I want to second the opinion that you are doing great---I never get the impression that you're ignoring anything! You have a very difficult situation and doctors telling you very different things. They prescribe something that doesn't work or is hard to administer. You have an infant and a boy in kindergarten in addition to dealing with a chronically sick child. Give yourself a break and a hug for all that you manage. I wish I knew answers and could be more helpful. I second the nebulizer idea---those are definitely easier to administer.

I would stay with the simple diet the allergist recommended for now, whether you use meds on top of that or not. I was wondering about the antihistamines and the skin tests last night---it dawned on me too that you might have gotten some false negatives as a result. Perhaps it would be worthwhile to call the specialist you saw and say (1) I can't administer the spacer---a nebulizer is what friends are suggesting might be better; (2) he has terrible itching after going off the antihistamine---can I taper off it instead?

boyohboyohboy replied:
i called the allergist today, and told him that we had to put jake back on the antihistamine, that he was just a mess without it. so we did and he finally slept last night.
also i told them that he has yet to get a dose of the flovent, he wont do the inhalor, i asked for a nebulizer, and he told me no, that i am the parent that flovent is better, and i have to get it in him..i still have no idea how to do it.
then last night i went shopping and got some whole soy yogurt, if was kosher and vegan and said no dairy..well he ate it and loved it! i was so glad, well this am he seemed to be reacting as if he had dairy so i go on line to see if there is a 800 number to ask someone if there is something in it he might be allergic too, finding out what these reactions are to is half my battle, so i google it and found that there were recalls in june of two flavors of the yogurt for cross contamination due to dairy. well i wrote the company an email and told them what i was seeing and asked if it could be in the flavor i bought too, well they called me! and told me their entire process, and its doubtful it was the yogurt, and they were so nice, its nice to know there is a company out there that cares so much, their process is really extensive. to much to type..but i was impressed. we will be gettig more of their products..
but i was thinking as you said, what about the tests, she said his histamine pin prick showed he was reacting well, so it was ok he was on the meds..when the tests were done.
i am still scared to death to give him peanut butter.
thanks guys for being so supportive. its hard somedays,

PrairieMom replied:
I find it really strange that a Dr would tell you no, you can't use a nebulizer that the child will do, instead fight your kid tooth and nail to give him a partial dose of a steroid that really isn't much different than the pulmicort. I'm sorry. What a pain. As if you don't have to fight him on enough stuff. Poor kid.

Here is how you get your 2 yo to do the inhaler.

Sit on the floor and put him on your lap. Cross your legs over his legs, and put our arm across his chest, pinning his arms at his side. Now, put your head next to his head, and kind of try to hold it still, and use your free arm to place the mask on his face and puff the inhaler.
Or even better, sit in that position and have someone help you put the mask to his face and push the medication.

Traumatic? yes. a total PITA? Yes. Something I would do to my kid? If I had to yes. it works, Its not my first choice.

One other way, (if you don't have to restrain his body) is to hold the mask on the palm of your hand, and hang on to his cheek/ chin with your fingers of the same hand. It helps keep the mask tight against his face.

if it helps at all, the chamber will hold the medication for up to 2 minutes, so don't worry that you missed the does, or if you should re-puff or not. and remember to rinse his mouth so he doesn't get thrush.

PrairieMom replied: I almost forgot, I wanted to send you HUGE You are doing a great job with Jakob. So much has been thrown at you, and you are just taking it bit by bit and doing the best you can. Diets are super hard, esp when you have an entire family that also needs to be adjusting. I can't imagine how hard it must be, and you are really rising to the occasion! Hang in there and keep up the good work!

lisar replied: I will admit I didnt read all the responses. But when my sisters son went in for his allergy testing he wasnt allowed to be on any kind of anti-histimine (sp?) for 2 weeks prior to the testing cause it could mess up the test. Did the dr office know he was on it actively at the time of the test, and did you mention it to them? I would call them and make sure they didnt overlook that or something just in case he needs to be tested again.
I am so sorry you are having to deal with this, it must be so hard on you.

boyohboyohboy replied:
tara so if i push the puff into the chamber, and he immediately moves the mask off his face, i should just put it back on and let him take the 6 breaths, not push for another puff? its stays in there for 2 mins?

PrairieMom replied:
yes. If he moves his face the med will stay in there for up to 2 minutes.

He will get used to it, I promise. I assume he is strong willed, so it will take a while. I really hope you don't have to fight him to hard. Its such a bummer.

boyohboyohboy replied: a strong willed child would be an understatement for jakob.
he sees me coming, starts running, i have to chase him catch him as he wiggles to get away from me, then hold him on my lap, he keeps turning his head back and forth saying no no no! he is banging his head against mine..
i am going to do this till monday, and if it conts. call again. the dr is great, but he has to be realistic too.
he told me that the entire hosp is getting rid of nebs because they feel its to time consuming, and harder then the inhaler. i did the nebs on caleb from the time he was 9 months old and it was not like this. and i felt he was getting the medication.

DansMom replied: Oh Stacey---I just remembered something that helped with Daniel and the spacer. I gave some doses to a teddy bear, and I let him give some doses to a teddy bear. He felt some control that way. I let him try the spray out in the air, and then eventually he wanted to be the one to push it while the mask was on (with help from me). And I told him to count to six with the mask on.

PrairieMom replied:


That is absolutely the dumbest thing that I have ever heard. How big is this hospital? It does take longer to do a neb, but different situations call for different measures. thats why it is great that many drugs can be given both ways.
I work in a 500 plus bed hospital, that is growing into a childrens research hospital along the lines of johnshopkins and mayo in the next 10 years, and I can tell you that we are definitely not trending away from nebs. that just seems really strange to me.

I imagine that he is super strong willed. He has no control over anything, so of course he is going to fight you on this. Its a minor thing tho, compared to what he has to go through. If I were in his shoes I'd fight like crazy too.

boyohboyohboy replied: the philadelphia childrens hosp. is huge. it also is a research hosp on the lines of mayo. he has several divisions in the hosp. and told us that they are all going neb free.
I guess each place does things differently, but i just tried again, and he is so mad at me. he got maybe one or two breaths but not six.
i just cant hold on to him and keep his head in place he gets away from me.
but i will keep trying.
thanks for the help and advice

PrairieMom replied:
That is very interesting to me, I'm gonna have to poke around and see what the neb/ inhaler deal is there.

boyohboyohboy replied: this is the hosp
http://www.chop.edu/consumer/index.jsp

boyohboyohboy replied: and this is the dr
http://www.chop.edu/consumer/pat_care_fam_...ge.jsp?id=20398

PrairieMom replied: Don't get me wrong, I'm not questioning your hospital or Dr or anything, I am just curious. Thats all. I was thinking that you were at some rinky dink hospital, that only has a few beds. We have a lot of those here, a lot of them do inhalers just because they don't have piped in oxygen to do nebs.

Thanks for the links. I have been poking around the RT professional sites too, Its hard to look to far into anything with the kids awake.

luvmykids replied: Another idea with the spacer, we would practice without it, going "One, two, three BIG breath" and do it a few times, then we'd do it again with the inhaler. Also, if you can keep it on his face but he's crying, that's ok...our ped said it was actually great that way b/c the crying forced Colt to take a deep breath

I have boxes and boxes of pulmacort and three neb machines, want me to send you some since the dr is being a turd?