Re: Help!

[Guest guest]

Wow Haven I'm so sorry! It is odd that your son just now developed a

peanut allergy. We see Dr. Hallet here in Austin and we have seen Dr.

Rao. We saw Dr. Rao when he first became a DAN doctor and I was not

impressed, I knew more than he did. He told me to start giving lots of

supplements all at once and wanted to treat for yeast even though on

the test we did the yeast was not out of range. I felt like he had a

canned response to treating my son like he heard something at a

conference and treated everyone the same. Could be different now. I'm

not sure if Dr. does this kind of testing but you should call

and ask. Even if he does not they may have someone they can suggest.

Peanut allergies can be tricky. Some kids can't even touch something

that has had peanuts on it or is prepared in a place that serves

peanuts. Think back to the other day and see if perhaps there were

some kind of nuts in the preparation of the food that caused the

reaction. Typically children grow out of a peanut allergy not into to

it so this has me stumped. Hopefully he'll be better soon. My gut says

with a throat closing up to go right to the Epipen luckily all is well

now. Keep us posted.

Trina

> Listmates,

>

> My son had some kind of reaction to something after dinner on Thursday. We

> gave asthma meds, B enadryl and he was fine. Then Friday nite after dinner

> he put a little peanut butter on a rice cake, and within minutes he was in

> distress! I know his throat was closing up as he was grabbing his throat.

> We put the rescue protocol in place and he was getting better, but off to

> urgent care we went to be sure.

>

> He has NEVER tested allergic to peanuts before, but I know this was the

> culprit (I have no clue as to what caused the asthma after eating on

> Thursday night, but that was mild in comparison.

>

> Does Dr. do food allergy testing? We would like to try a different

> allergist/immunologist and hopefully someone knowledgeable about our kids'

> issues.

>

> I think we need to re-do food allergy testing ASAP. This was really scary.

> I did not get much sleep last night. I had the Epipen ready but he got

> better with just Xopanex and Benadryl. I hate to put him back on steroids

> as they made him gain a lot of weight! The NP said I should have given him

> the Epipen first. Should I have? I was taught to do Benadryl and Xopanex

> and keep a close eye on him, and if that didn't work, then give the Epipen.

>

> This really took us by surprise as since we started home schooling, he has

> not been sick, except for one bout of cellulitis from insect bite. This has

> been the healthiest fall since regression. I'm stumped, but need to find

> answers. Certainly won't let him have peanuts or peanut butter again! We

> need to find a doctor in DFW area.

>

> We have used Dr. Rao in the past, but we would like a fresh perspective.

>

> Thanks,

>

> Haven

>

>

>

>

[Guest guest]

Trina,Do you have any experience in giving the Epipen?  We have watched Ethan so closely due to his fire ant allergy that we have never had to use it, but this last episode made me realize that I am probably going to have to give it unless I can find and eliminate what did this to him.

I was taught to give it in the outside of the thigh, and that you got give it right through clothing.  but the NP said to give it to him in the arm and roll up his sleeve?  These medical personnel can be so confusing -- one says one way and another says another way.  It is frustrating!

This all got kicked off from a cold he was coming down with.  I don't know what to do.  I have an attendant who has three small children.  Well, they get sick all the time, and once she wanted to come even when her child still had a fever.  I said no.  She doesn't understand how easy it is for my son to get sick.  Well, she was out all of last week except Thursday, but SHE showed up with a cold.  Ethan started coming down with it that evening.  I'm just too the point I guess I may have to do without an attendant as I know it isn't fair to them as they don't get paid if they don't work and yet I don't want one here if they are sick or their kids have fevers. 

He started having asthma again last night while he was sleeping.  I am going to get him into the doctor's tomorrow and get him back on Pulmacort for a while.  I hate this!  The steroids make him gain so much weight!  He is eleven and about 5'2 " and he weighs 149 pounds!  I am so afraid he is going to wind up with diabetes, too!

I will call Dr. 's office in the morning and see if they can recommend someone if they don't do the food allergy testing.Thanks, Trina!Haven

[Guest guest]

 

I will call Dr. 's office in the morning and see if they can recommend someone if they don't do the food allergy testing.Thanks, Trina!Haven

 Hi Haven, Many times in our case even w/food allergies test, peanut butter or nuts in general never shown up but I was told anything example, nuts, especially peanuts, can be moldy.

Besides food allergies, also consider any mold test too.

Glad you were aware of just any quick solutions which at this time your son had some allergy relief to such reactive food. My son is a patient at the Neurosensory Center and his doc has prescribed whatever test I has asked if I had any concerns at the time besides on what they specialize with  or whatever they had recommended which in my book is nice to have such a connection.

In the mean time, if you do not mind some reading, Google: Mold...Reactive Airways Dysfunction Syndrome (RADS) type of asthma.My Best,Irma 

 

_

[Guest guest]

No not directly but I know lots of kids who use it. I have always

understood it to be on the thigh but you should ask the allergist. My

oldest son has had allergy induced asthma in the past. Sounds like

what you may be dealing with. We had good luck with a Nebulizer (sp?)

and just keeping on top of colds and allergies and treating them

quickly before the cough really set in. Have you considered a

cortisone shot? Matt and my husband and I get these once a year it

really seems to help. Dr. does this for us.

As for the attendant I'd look for someone who does not have children.

College students even high school seniors might be good. Anyone who is

around children a lot is going to come down with colds. People with

small children who pick up every bug since their immune systems are

just getting ramped up is probably not a good fit. Dr. also

has a product called P5P it's a spray and it helps keep Matt healthy

he's been much healthier than my other two this year who don't use the

spray. I stay healthy by not shaking hands and always using my own

glass at home. Since I'm singing again I'm extra cautious, coming down

with a cold does not bode well for singing a high C. has

an excellent immune system you should ask her for kid sitting time,

it's a different rate than tutoring time. Or, she may know someone at

SMU who could use the hours. Keep me posted.

Trina

> Trina,

>

> Do you have any experience in giving the Epipen? We have watched Ethan so

> closely due to his fire ant allergy that we have never had to use it, but

> this last episode made me realize that I am probably going to have to give

> it unless I can find and eliminate what did this to him.

>

> I was taught to give it in the outside of the thigh, and that you got give

> it right through clothing. but the NP said to give it to him in the arm and

> roll up his sleeve? These medical personnel can be so confusing -- one says

> one way and another says another way. It is frustrating!

>

> This all got kicked off from a cold he was coming down with. I don't know

> what to do. I have an attendant who has three small children. Well, they

> get sick all the time, and once she wanted to come even when her child still

> had a fever. I said no. She doesn't understand how easy it is for my son

> to get sick. Well, she was out all of last week except Thursday, but SHE

> showed up with a cold. Ethan started coming down with it that evening. I'm

> just too the point I guess I may have to do without an attendant as I know

> it isn't fair to them as they don't get paid if they don't work and yet I

> don't want one here if they are sick or their kids have fevers.

>

> He started having asthma again last night while he was sleeping. I am going

> to get him into the doctor's tomorrow and get him back on Pulmacort for a

> while. I hate this! The steroids make him gain so much weight! He is

> eleven and about 5'2 " and he weighs 149 pounds! I am so afraid he is going

> to wind up with diabetes, too!

>

> I will call Dr. 's office in the morning and see if they can

> recommend someone if they don't do the food allergy testing.

>

> Thanks, Trina!

>

> Haven

>

[Guest guest]

Mold? Interesting. We are all reactive to mold around here. The last

few days have been especially bad. I have been taking Benadryl every 6

hours as well as Matt but he still says he's itchy and his eyes are

swollen.

I would not be surprised Haven if mold in the nuts combined with the

high mold count and the damp cold weather could have set this off. Dr.

can help, I think they are around Monday.

T

> No not directly but I know lots of kids who use it. I have always

> understood it to be on the thigh but you should ask the allergist. My

> oldest son has had allergy induced asthma in the past. Sounds like

> what you may be dealing with. We had good luck with a Nebulizer (sp?)

> and just keeping on top of colds and allergies and treating them

> quickly before the cough really set in. Have you considered a

> cortisone shot? Matt and my husband and I get these once a year it

> really seems to help. Dr. does this for us.

> As for the attendant I'd look for someone who does not have children.

> College students even high school seniors might be good. Anyone who is

> around children a lot is going to come down with colds. People with

> small children who pick up every bug since their immune systems are

> just getting ramped up is probably not a good fit. Dr. also

> has a product called P5P it's a spray and it helps keep Matt healthy

> he's been much healthier than my other two this year who don't use the

> spray. I stay healthy by not shaking hands and always using my own

> glass at home. Since I'm singing again I'm extra cautious, coming down

> with a cold does not bode well for singing a high C. has

> an excellent immune system you should ask her for kid sitting time,

> it's a different rate than tutoring time. Or, she may know someone at

> SMU who could use the hours. Keep me posted.

> Trina

>

>

>> Trina,

>>

>> Do you have any experience in giving the Epipen? We have watched Ethan

>> so

>> closely due to his fire ant allergy that we have never had to use it, but

>> this last episode made me realize that I am probably going to have to

>> give

>> it unless I can find and eliminate what did this to him.

>>

>> I was taught to give it in the outside of the thigh, and that you got

>> give

>> it right through clothing. but the NP said to give it to him in the arm

>> and

>> roll up his sleeve? These medical personnel can be so confusing -- one

>> says

>> one way and another says another way. It is frustrating!

>>

>> This all got kicked off from a cold he was coming down with. I don't

>> know

>> what to do. I have an attendant who has three small children. Well,

>> they

>> get sick all the time, and once she wanted to come even when her child

>> still

>> had a fever. I said no. She doesn't understand how easy it is for my

>> son

>> to get sick. Well, she was out all of last week except Thursday, but SHE

>> showed up with a cold. Ethan started coming down with it that evening.

>> I'm

>> just too the point I guess I may have to do without an attendant as I

>> know

>> it isn't fair to them as they don't get paid if they don't work and yet I

>> don't want one here if they are sick or their kids have fevers.

>>

>> He started having asthma again last night while he was sleeping. I am

>> going

>> to get him into the doctor's tomorrow and get him back on Pulmacort for a

>> while. I hate this! The steroids make him gain so much weight! He is

>> eleven and about 5'2 " and he weighs 149 pounds! I am so afraid he is

>> going

>> to wind up with diabetes, too!

>>

>> I will call Dr. 's office in the morning and see if they can

>> recommend someone if they don't do the food allergy testing.

>>

>> Thanks, Trina!

>>

>> Haven

>>

>

[Guest guest]

Haven, as far as allergists go, I have taken my children to and have heard from other that Dr. Sugarman is the best out there. He really helped us with the things that were going on and really made a difference with both my children's asthma..... As far as the epi pen goes, both ways are perfectly acceptable. I think on the thigh is almost the better way because there is a larger blood supply and it can work a little faster. You can give it through clothing or on bare skin, it is up to you....Carolyn RN, BSNTo: Texas-Autism-Advocacy Sent: Sun, December 19, 2010 8:33:18 AMSubject: Re: Help!

Trina,Do you have any experience in giving the Epipen? We have watched Ethan so closely due to his fire ant allergy that we have never had to use it, but this last episode made me realize that I am probably going to have to give it unless I can find and eliminate what did this to him.

I was taught to give it in the outside of the thigh, and that you got give it right through clothing. but the NP said to give it to him in the arm and roll up his sleeve? These medical personnel can be so confusing -- one says one way and another says another way. It is frustrating!

This all got kicked off from a cold he was coming down with. I don't know what to do. I have an attendant who has three small children. Well, they get sick all the time, and once she wanted to come even when her child still had a fever. I said no. She doesn't understand how easy it is for my son to get sick. Well, she was out all of last week except Thursday, but SHE showed up with a cold. Ethan started coming down with it that evening. I'm just too the point I guess I may have to do without an attendant as I know it isn't fair to them as they don't get paid if they don't work and yet I don't want one here if they are sick or their kids have fevers.

He started having asthma again last night while he was sleeping. I am going to get him into the doctor's tomorrow and get him back on Pulmacort for a while. I hate this! The steroids make him gain so much weight! He is eleven and about 5'2" and he weighs 149 pounds! I am so afraid he is going to wind up with diabetes, too!

I will call Dr. 's office in the morning and see if they can recommend someone if they don't do the food allergy testing.Thanks, Trina!Haven

[Guest guest]

I will call and see what days they are at the office in Frisco.It was a brand new jar of peanut butter --all natural, but now that you guys mention mold, I think I will throw it out!  I was going to make tiger butter with it for my Christmas boxes I give to friends!

I'm pretty sure Ethan tested allergic to mold and dust.  How in the world do people get away from mold?  It is everywhere! 

[Guest guest]

Thanks Carolyn.  I have heard of Dr. Sugarman from somewhere.  Where is he located?Our big thing is to try to keep Ethan away from steroids as much as possible due to the unbelievable weight gain and voracious hunger they cause in our son, but we know we have to whatever we have to do.

However, we saw Dr. Rembecke once, and all he did was throw tons of different steroids at us and basically our kid was going to be on various steroids all day long.  Oral steroids cause psychosis in our son, in fact, he had an episode in Dr. Rembecke's office, and NO ONE offered to help me!! I got hit, kicked, bit, punched and peed all over, and all they did was stare at me like I were a bad parent or something. 

I will look up Dr. Sugarman.

[Guest guest]

Carolyn,Is Dr. Sugarman supportive of biomed?  Is he a healer versus a dealer?  I don't want to waste time with someone who just wants to throw steroids at us five times a day and send us home.  I am interested in finding out the culprit and trying to eliminate it from my son's environment and use meds, including steroids when necessary and in a supporting role and not as a first line of treatment.

Thanks,Haven

[Guest guest]

Trina,Do you know anything about how to be able to write off some of the cost of home schooling?  I think I heard somewhere that if you have a doctor's note of the necessity of it, you may write of some of the cost.  Thanks,

Haven

[Guest guest]

My girls have never been on steroids, but short tapers of steroids have made a difference for me (5 days).... Is he ok with inhaled steroids??? In other words pulmicort/advair/serevent and such?? I would say that if he was on a maintenance inhaler that may make a difference, Advair has made all the difference in the world for me.... Asthma is difficult to deal with, I don't like the steroids either, but short bursts have brought me out of difficult situations!Carolyn RN,BSNTo: Texas-Autism-Advocacy Sent: Sun, December 19, 2010 9:28:25 AMSubject: Re: Help!

Thanks Carolyn. I have heard of Dr. Sugarman from somewhere. Where is he located?Our big thing is to try to keep Ethan away from steroids as much as possible due to the unbelievable weight gain and voracious hunger they cause in our son, but we know we have to whatever we have to do.

However, we saw Dr. Rembecke once, and all he did was throw tons of different steroids at us and basically our kid was going to be on various steroids all day long. Oral steroids cause psychosis in our son, in fact, he had an episode in Dr. Rembecke's office, and NO ONE offered to help me!! I got hit, kicked, bit, punched and peed all over, and all they did was stare at me like I were a bad parent or something.

I will look up Dr. Sugarman.

[Guest guest]

I don't know about the biomed part, I don't do biomed and had no idea that problems existed when my children saw him. However, in my experience, and from knowledge of steroids, no physician should be throwing steroids at you 5 times per day for an extended period of time unless there are extenuating circumstances (some immune system disorders or COPD- which should not be the case in children). The goal of most physicians is to wean people off of steroids, as good as they are to help with breathing issues, they are terrible for nearly every other system in the body. For allergists, they often give a taper of steroids, in other words take one pill 4 times a day for 3 days then 3 times a day for 3 days and so on, my favorite is the medrol pak because you are off of it in like 5 or 6

days. He will probably want to put your son on a maintenance medication such as advair, serevent or something similar which are longer term inhaled steroids and taken all the time. I have also had allergists request me to buy (when I didn't have any money) air purifiers and other things that will help to protect against allergens and molds...carolyn RN, BSNTo: Texas-Autism-Advocacy Sent: Sun, December 19, 2010 9:37:37 AMSubject: Re: Help!

Carolyn,Is Dr. Sugarman supportive of biomed? Is he a healer versus a dealer? I don't want to waste time with someone who just wants to throw steroids at us five times a day and send us home. I am interested in finding out the culprit and trying to eliminate it from my son's environment and use meds, including steroids when necessary and in a supporting role and not as a first line of treatment.

Thanks,Haven

[Guest guest]

Yes, he was on Pulmacort whenever he was in school, but during summers (even while he was in private summer school)  he did not need the Pulmacort and did not get sick.  I should have sent the attendeant home when I saw her cold, but she is a mom with three young children and getting NO child support, but still, this was a scary situation, and my son is prone to go from perfectly fine to pneumonia in a short span of time.

My son is diagnosed with a non-specified immune disorder.  It is mostly respiratory and started after regression.  He has had pneumonia eight times since the age of two.  He has had countless episodes of bronchitis and he has the reactive asthma.  We took him out of school in September, and we have been amazed at how healthy he has been up until now.  We use the Xopanex rescue inhaler whenever he starts clearing his throat excessively or coughing.  We use the nebulizer when this becomes chronic.

I hate to have to think of getting another attendant, but she doesn't seem to understand how easy it is for our son to catch respiratory illnesses nor how easy it is for him to develop complications from it.

I do feel we need to put him back on Pulmacort for a short term.  These drugs have made him gain a lot of weight and they predispose kids to diabetes and cataracts.  Hopefully, Dr. Sugarman will help us manage these problems without saying he has to take the drugs everyday for the rest of his life no matter what (This is what some others have told us, and we just think this is not the way to heal the issue).

My son's immune system is out of whack.  He cannot even get bitten by an insect without developing cellulitis from every bite site!We have to watch him closely whenever he goes outside due to life threatening fire ant allergy.  He got the shots for years, but they did nothing to make the allergy better.  Very frustrating.

Well, he definitely caught the attendants cold, so he is feeling puny today.  I hope he is better by Christmas.  He is so excited about it!

[Guest guest]

Trina,I am going to ask about a possible attendant from SMU.  We are going on CDS option in January, so will be able to pay a little more.The attendant we have is always noticeably looking for her next job, and I understand that with three kids to support.  I think we need someone without children, simply because I think this might give Ethan's immune system time to regroup and heal with the protocols we have planned for the coming year.

That was a great idea!