Doctors and allergies

[vermontmoms]

Ok, the first part of this is going to be a vent. We have been in and out of the childrens hospital with our son the past 2 months. Our son all of the sudden has severe hearing loss in his right ear (very close to needing a cochlear implant). His ENT ran tests and they thought they found a tumor. After 2 more referrals (neuro/oncology) they determined that my son's sinus is malformed and it is not a tumor. The ENT said we may never know why my son has sudden severe hearing loss. THIS IS NOT OK WITH ME!

 

Next we meet with Neuro and she says that my so has TS/ OCD and sensory issues but she asked us to get an EEG to rule out seizures. She said PANDAS is a different philosophy than hers and basically blows that dx off. She also said she would recommend psy drugs. NO, NOT TILL YOU TELL ME THE CAUSE. She can't and says it is what it is and that the only treatment is meds. So we leave.

 

Finally I scheduled an appt with Dr. Melamed (immunologist/allergist). Our appt was today; he said that on a scale of 1-10 for allergies our son is a 12. He is taking 30+ vials of blood over 3 draws and running numerous tests on our son. He said that when a child has so many allergies it shuts off or causes a malfunction in ones immune system. He also said couple that with repeated strep/scarlett fever and myco infections and you get a child like my son (tics, ocd, sensory, and hearing loss). He said that my son's immune system is so compromised that it is like giving the strep bacteria a master key for all areas in his body to wreak havoc. In 3 wks we will meet him again and discuss all the results and treatment plan. So far we are thrilled with him! I am so thankful we are getting some answers. He is 90% sure my sons hearing loss is directly related to his infections.

 

So now back to my rant....how can doctors justify giving you a "deal with it b/c i don't know what is wrong" diagnosis and telling you it is life-long. The thing that pisses me even more is they saw inflamation in his sinus and in his nasal areas and blew it off. Never referred us for allergy testing, never tried to seek an answer to the WHY question. They just tried to give us band-aids (drugs and a hearing aid). It burns me up!!! As soon as we have more answers I am calling both docs and letting them have it! I can only imagine how many people take their dx as the end word.

 

Anyway, have any of you had PANDAS kids with severe allergies? If yes, what do/did you do? How have you treated such a frail immune system? Is IVIG something we should look into?

 

My head is spinning in two diff directions...one way from sheer frustration of doctors and the other way for all the new info this new doc provided. I just feel like we are running a marathon! And to top it off my father-in-law died this morning so we are dealing with a of those emotions too. My spouse is flying out on Thurs for the burial so it will be just me and the boys till Mon. Speaking of the boys...we haven't told them yet b/c our son was not happy with the news today about all his allergies and he was not in a good mood after we got out of the appt at close to 6pm. My spouse and I have to figure out how to tell them (he lived with us till a few wks ago but all his stuff is still in his room). Either way it won't be easy!

 

Well, thanks for listening!!!! We would be so appreciative of any insight you can offer! This is new territory for us so we are so overwhelmed...on every level...

 

Thanks again!!!

Jen

Edited March 7, 2012 by vermontmoms

[MomtoJake]

Jen, just wanted to send hugs your way today--- you have a lot on your plate. As far as allergies go, we are acutally going tomorrow to see an allergist /immunologist referred by Dr. Murphy due to my DS's high IGE and other symptoms. I will let you know how it turns out. And you nailed it -- you were given a bandaid- typical modern western medicine in action. You have every right to rant.

[vermontmoms]

Jen, just wanted to send hugs your way today--- you have a lot on your plate. As far as allergies go, we are acutally going tomorrow to see an allergist /immunologist referred by Dr. Murphy due to my DS's high IGE and other symptoms. I will let you know how it turns out. And you nailed it -- you were given a bandaid- typical modern western medicine in action. You have every right to rant.

 

Thanks!!! Honestly, I feel so much better just getting it all off my chest. I don't have any answers yet but I know we will get there. I am not going to accept "I don't know" as an answer; I will keep looking until someone answers the "WHY."

 

I hope you find out some useful info today. Our doc was great, so thorough and comforting.

Thanks again for the response!

Jen

[nicklemama]

This is timely. I recently had my DS tested for allergies, after two years of itchy red eyes and constantly being on a prescription eye drop that is $125 for a teeny, tiny bottle. My ped never suggested doing testing. I finally took it upon myself. Turns out, he has a significant allergy to dust/dust mites plus lesser allergy to trees, ragweed, guinea pigs(who woulda guessed?) and cats, of which we have 3.

 

I've been doing some reading and seeing how allergies are related to some of his PANDAS symptoms. I decided to take him to see a biomed doctor and do some more advanced food allergy testing. He had the blood drawn yesterday. We will see the dr in 6 wks, after all tests are in (he's also being tested for other things like methylation and the like).

 

He's been on claritin daily for 2 wks now and we are seeing a difference in his behavior. I got an email from his teacher this morning telling me he has been improving at school. He's problem solving w/ the other kids rather than just getting mad at them and being unable to see anyone's side but his own or trying to work out a difference.

 

The bio med doctor feels he has some food allergies and if we could get those taken care of, we'd see further improvement. We are also looking at nutritional deficiencies. This dr has a good understanding of PANDAS. He doesn't directly treat it, but he addresses inflammation and other things that seem to go along w/ PANDAS. He feels PANDAS has many overlapping things w/ allergy, asthma, ADHD and ASD.

 

DS has been doing really well the past month, but the past two weeks has been even better. He is 10 months post IVIG. He made huge improvements, then we had setbacks in Dec and Jan, when he was sick w/ what appeared to be started as a cold that never went away for two months.

 

I'm sorry for your family's loss. I have no advice on how to break that news. I think you are on the right track w/ the allergies. Hope you see some improvements w/ treatment.

 

Lastly, my own vent about doctors who just do nothing or want to throw psych meds at a problem when they don't exactly know what the problem is. UGH!!!!!!!!

[peglem]

Sorry about the doc problems, wish I couldn't relate. I just wanted to mention, if your child has been on azith- hearing loss is a rare side affect.

[mkur]

I use the band-aid analogy all the time. I have a lot of negative feelings for neuros and peds. They kept referring us to the psy for treatment (band-aids - meds). My son got sick and no one can give me an answer. I want to know what went wrong and why. I have a younger son and I keep waiting for the bomb to hit him. I feel your pain - so sorry. I'm glad you kept looking and found a new dr who is willing to help. Pat yourself on the back and give yourself a hug. Hope your week gets better.

[thereishope]

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Edited October 18, 2016 by vickie

[Ozimum]

I'm so glad you feel like you're getting some answers!

 

I'd just like to recommend Dr Ken Bock's book: "Healing the New Childhood Epidemics. Autism, ADHD, Asthma and Allergies. The Groundbreaking Program for the 4-A Disorders." In it he says "We are the Th-2 skewed society," whereas the Th-1 and Th-2 arms of our immune system should be in balance. He argues that the excess activity of Th-2 cells triggers an over active immune response resulting in allergy, and autoimmunity. Allergy triggers inflammation which can in turn trigger asthma if inflammation occurs in the airways. He also argues that kids with ADHD and Autism also tend to be skewed Th-2 (though it can go the other way in Autism.)

 

It's a good read. Sorting out the immune system just makes sense to me. DAN!/Biomed drs like Dr Ken have taken on the idea of treating the whole body with a more integrative approach. We've gone the Biomed route with DS18 and he's doing really well. Sounds like your dr is on this wavelength! Whoohoo!

[vermontmoms]

Sorry about the doc problems, wish I couldn't relate. I just wanted to mention, if your child has been on azith- hearing loss is a rare side affect.

 

He was on it but stopped in Dec. I am not sure where the hearing loss came from but in all the studies it seemed like it was a progression (ringing in ears, faint noise, etc). Even then it was a very rare occurance. My son never had any symptoms like this and it was only caught at a school screen. Thanks for mentioning.

Edited March 7, 2012 by vermontmoms

[vermontmoms]

I'm so glad you feel like you're getting some answers!

 

I'd just like to recommend Dr Ken Bock's book: "Healing the New Childhood Epidemics. Autism, ADHD, Asthma and Allergies. The Groundbreaking Program for the 4-A Disorders."

 

Thanks!!! Funny thing is I just picked up this book today at our library! Along with 5 others on allergies and immune system. Great minds think alike!!!

[NancyD]

As a doctor he is FANTASTIC - I highly recommend him. We have been seeing him for over 9 years. He treated my DD's allergies with monthly IV glutathione and supplements (specifically high doses of Querciplex and Transfer Factor, among others). She was allergic to almost every food and also had environmental allergies and severe colitis. After 2-3 years of monthly IV Glutathione her allergies were all gone and colitis healed. Now she can eat any food she wants, as long as there are no dye or additives in it. We did IVIg, abx, and supplements for PANDAS, which has been in remission for almost 2 years. Tics and violent rages (both were very severe by pre-pubescent years), as well as sleep problems 100% gone. He has been treating DD's Lyme and Bartonella, which he diagnosed in 2010 (as well as my Lyme and Bartonella). Also treating DD's KPU and methylation problems (DD has mutated MTHFR gene). The only neurological symptoms DD has left are anxiety/OCD, which seem to be the most difficult to eradicate. My daughter was the PANDAS case study in his book -- our pseudo names were Alyssa and Liza. One more thing...DD used to be on the moderate end of the autism spectrum. Today, you would NEVER know. She no longer meets the diagnostic criteria for ASD, thanks to Integrative medicine!

[Kimflow]

Hi Nancy,

Can you share more about the Transfer Factor that Dr. Bock put your child on. Where do you get it?

My DAN recommended something called Immunovir but wondering if I should try Transfer Factor first. I know that a nutritionist recently recommended it to another PANDAS mom. Do you know if there is any dairy in it?

Thanks, Kim

[fightingmom]

As a doctor he is FANTASTIC - I highly recommend him. We have been seeing him for over 9 years. He treated my DD's allergies with monthly IV glutathione and supplements (specifically high doses of Querciplex and Transfer Factor, among others). She was allergic to almost every food and also had environmental allergies and severe colitis. After 2-3 years of monthly IV Glutathione her allergies were all gone and colitis healed. Now she can eat any food she wants, as long as there are no dye or additives in it. We did IVIg, abx, and supplements for PANDAS, which has been in remission for almost 2 years. Tics and violent rages (both were very severe by pre-pubescent years), as well as sleep problems 100% gone. He has been treating DD's Lyme and Bartonella, which he diagnosed in 2010 (as well as my Lyme and Bartonella). Also treating DD's KPU and methylation problems (DD has mutated MTHFR gene). The only neurological symptoms DD has left are anxiety/OCD, which seem to be the most difficult to eradicate. My daughter was the PANDAS case study in his book -- our pseudo names were Alyssa and Liza. One more thing...DD used to be on the moderate end of the autism spectrum. Today, you would NEVER know. She no longer meets the diagnostic criteria for ASD, thanks to Integrative medicine!

 

Your post is SO interesting to me. I have been having severe allergic responses to MANY things and I also found out with my pepcid incident that my son is likely high histamine as well. I believe we are both high histamine, but I don't think either of us have true "allergies". I think our bodies are in major inflammatory, defensive mode all the time and it presents in allergy symptoms, but there is a bigger underlying reason...and my theory on why is that our methylation is out of sorts. Your treatment with glutathione really makes me feel like we are on the right path. I recently started taking lactoferrin/colostrum, too (bought it for my sick cat, but I decided tot take it, too).

Edited April 18, 2012 by fightingmom

[NancyD]

Kim,

 

Definitely no dairy in it. My DD started taking it when she was on a gluten- and casein-free diet. We use 4Life Transfer Factor TriFactor and now also Transfer Factor LymPlus by Researched Nutritionals. You can buy it online. When she was taking just the Transfer Factor TriFactor she took 3 capsules BID. Now that she's taking the LymPlus too she is taking one capsule BID of each daily. I too take Transfer Factor TriFactor and LymPlus -- both an important part of my treatment.

 

Nancy

[JenniferG]

Kim,

 

Definitely no dairy in it. My DD started taking it when she was on a gluten- and casein-free diet. We use 4Life Transfer Factor TriFactor and now also Transfer Factor LymPlus by Researched Nutritionals. You can buy it online. When she was taking just the Transfer Factor TriFactor she took 3 capsules BID. Now that she's taking the LymPlus too she is taking one capsule BID of each daily. I too take Transfer Factor TriFactor and LymPlus -- both an important part of my treatment.

 

Nancy

Are you still using it? Did you get it from Forrest? Thanks.