Help-is there anything I can do now

[ShaesMom]

I scheduled an appt with the LLMD that pixiesmommy sees but I can't get us in until the end of June. My family cannot survive two more months of the daily raging attacks. Plus I'm really concerned about what this is doing to her brain! She is seeing a behaviorial therapist already but won't practice the techniques suggested to us.

 

Is there anything I can start before our appt to help alleviate the bipolar like behavior?

 

Can someone explain the EMF stuff to me?

 

And what about mold (which she is highly IgE allergic to)?

[matis_mom]

I scheduled an appt with the LLMD that pixiesmommy sees but I can't get us in until the end of June. My family cannot survive two more months of the daily raging attacks. Plus I'm really concerned about what this is doing to her brain! She is seeing a behaviorial therapist already but won't practice the techniques suggested to us.

 

Is there anything I can start before our appt to help alleviate the bipolar like behavior?

 

Can someone explain the EMF stuff to me?

 

And what about mold (which she is highly IgE allergic to)?

Wow, that's a very long wait... I'm so sorry you are going through this and have to wait this long! Do you have a pediatrician or anyone who can prescribe abxs to get you started? Have you tried herbals yet?

Also, if you have not done this already, call the LLMD and explain how desperate the situation is, and to please let you know if they have any cancellations.

[Iowadawn]

I scheduled an appt with the LLMD that pixiesmommy sees but I can't get us in until the end of June. My family cannot survive two more months of the daily raging attacks. Plus I'm really concerned about what this is doing to her brain! She is seeing a behaviorial therapist already but won't practice the techniques suggested to us.

 

Is there anything I can start before our appt to help alleviate the bipolar like behavior?

 

Can someone explain the EMF stuff to me?

 

And what about mold (which she is highly IgE allergic to)?

 

SHaesmom=

 

Just curious where the LLMD is. It has been a long time since we touched base. Our son is a PANDAS/TBI case. We see a doc in Grinnell, IA.

 

Dawn

[LNN]

You may want to start a new thread on mold and EMFs or search recent topics - there was some discussion on these in the past few weeks. I don't have much knowledge but others do.

 

I second the advice to make sure you're on a wait list for any cancellation.

 

In the meantime, the advice would be things that you're probably already doing - supporting the gut environment with diet and probiotics, anti-inflammatory diet...You can also look into detox options, to help clear the toxins from any bacteria her body is killing on its own and to help with any effects of mold, etc.

 

I know you're an old timer and don't want to tell you things you already know about CBT. For us, it was extremely helpful for the rages. For us, helping DS learn to compartmentalize the rage was critical. There had to be acceptable and unacceptable ways to vent in order for the rest of the family to survive. There are so many horrible symptoms that come with Pandas, lyme, etc...but rage is right at the top when it comes to the health of the whole family. Your heart can break at the sight of your child ticcing in class, or struggling with homework because of brain fog. But the damage done to the family because of rages leaves such deep wounds that can permanently change the way the family functions. I think it was one of the biggest challenges to my marriage because my husband and I reacted to it in such different ways (due to our own childhood experiences). I know you said Shae won't comply with her behavioral therapy. Can you elaborate?

[Suzan]

I sent you an email asking about neurotransmitters....I was looking for a better link and found this one, it touches on most of the topics, as a start anyway. Not sure if it will be helpful or not, maybe will give some good dieas or other things to look into to try to help.

 

http://restormedicine.com/naturopathic-approaches-to-lyme-disease-treatment/

[sf_mom]

By the way... do you intend to keep the feeding tube? It is a good way to administer medication if it turns out it is Lyme. I would recommend keeping it in until you figure things out.

 

-Wendy

[MichaelTampa]

Regarding the mold, the more you can do to reduce exposure, the better. Perhaps that means trying to keep the humidity and dust levels down. But, if you think she may be reacting to mold, there are things that can be taken to really help by binding with the toxins which helps eliminate them from the body. On the prescription side of things, cholestyramine is the drug of choice. It comes with sugars and/or fake sugars and other junk, what a shame, I get it at a compounding pharmacy so I can get it without those things. On the OTC side of things, chlorella can be very helpful as well. These are said to be very good against the mold neurotoxins, but also act against other things that might need elimination.

 

P.S. Bumped a few other old topics that might help you as well.

Edited April 22, 2011 by MichaelTampa

[LNN]

By the way... do you intend to keep the feeding tube? It is a good way to administer medication if it turns out it is Lyme. I would recommend keeping it in until you figure things out.

 

-Wendy

Just a head's up on liquid abx - personal experience is that they tend to be about twice the cost of pills. Because of my kids' weights, the only way to get certain doses of abx into them is to use liquid, even tho they both prefer pills. The cost of the liquids is killing us!

[ShaesMom]

By the way... do you intend to keep the feeding tube? It is a good way to administer medication if it turns out it is Lyme. I would recommend keeping it in until you figure things out.

 

-Wendy

 

Well the feeding tube (G tube in her tummy) wasn't really a "choice" we made per se. It is her sole source of nutrition-she does not eat any foods orally. Her meds are already administered through the tube. Her esophagus is swelling shut due to an autoimmune reaction to foods. The tube has been in place since February so that we could remove all foods and try to turn off the autoimmune reaction. We return to Cincinnati in May for another Endoscopy. If the path report comes back clean then the tube will stay in place for years while we add back 3-4 foods in their purest form over a 3-4 month period and then rescope. According to her GI most kiddos only find one safe food out of the 3-4. It is a very long process. If the scope does not come back clean then our next step is swallowed steriods for life to help with the inflammation. This sucks because we will only be putting a bandaid on the problem rather than solving it. We hope to avoid the steriod route at all costs. Swallowed steriods means that you take the medicine from inhalers and mix it with splenda to make a slurry and then swallow it. You want it thick so it will coat the esophagus. NASTY! http://www.apfed.org/

 

LLM-So in response to your comment about diet and probiotics....No she is not on a special diet for inflammation, probiotics etc because she cannot eat food. Supplements also present problems because if I can find one that is safe it will have to be trailed. She also has 15 IgE food allergies including dairy, soy, gluten and pork. Pork is very important because pork=gelatin=gel caps which means no pills. Also products like glycerol, magnesium stearate, mono & di glycerides are pork derived. We have to have Tylenol compounded.

 

Her therapist has suggested breathing exercises, games to redirect her brain, petting the animals etc... IF we can get her to do them they work. Unfortunately for us there is no gradual build up before she explodes. It is literally like a switch flips in her head and once that happens there is no stopping her until she is done.

 

Iowadawn-Hi! Yes our appt is with the same physician in Grinnell.

Edited April 22, 2011 by ShaesMom

[sf_mom]

Lets just say... I can't wait for your results either.

 

AND, I know of one other parent 'Autism/Lyme' child who had/has swelling in the esophagus. I do not believe the child was formally diagnosed with anything nor have they recheck since original scope. The child has made slow improvements with treatment with other symptoms. He was diagnosed with Babesia/Bartonella and Lyme.

 

If Lyme is involved I'll be curious to see if this particular disorder improves for her.

 

-Wendy

[Bill]

I scheduled an appt with the LLMD that pixiesmommy sees but I can't get us in until the end of June. My family cannot survive two more months of the daily raging attacks. Plus I'm really concerned about what this is doing to her brain! She is seeing a behaviorial therapist already but won't practice the techniques suggested to us.

 

Is there anything I can start before our appt to help alleviate the bipolar like behavior?

 

Can someone explain the EMF stuff to me?

 

And what about mold (which she is highly IgE allergic to)?

 

 

I'm not really offering advice as after reading previous posts, you are dealing with a lot more than I understand. Also, what worked for my son is not a popular choice but for daily raging, our son reacted very positively to SSRIs. First Zoloft which worked for 3 years (never more than 25mg) and now prozac which has worked for 21 months. Currently on 30mg/day; son is 13 and weighs 90lbs. Our goal is to get him off of them as soon as possible but it came down to committing him (or ourselves) or going with what works. Again though, my son's issues/symptoms much different from your situation so not sure it even applies.

 

Best of luck.

 

bill

[ShaesMom]

Lets just say... I can't wait for your results either.

 

AND, I know of one other parent 'Autism/Lyme' child who had/has swelling in the esophagus. I do not believe the child was formally diagnosed with anything nor have they recheck since original scope. The child has made slow improvements with treatment with other symptoms. He was diagnosed with Babesia/Bartonella and Lyme.

 

If Lyme is involved I'll be curious to see if this particular disorder improves for her.

 

-Wendy

 

I'm with you on that thought Wendy. I think I'm going to ask her GI if they can actually test for Lyme's when they do the biopsies.

[MichaelTampa]

By the way... do you intend to keep the feeding tube? It is a good way to administer medication if it turns out it is Lyme. I would recommend keeping it in until you figure things out.

 

-Wendy

Just a head's up on liquid abx - personal experience is that they tend to be about twice the cost of pills. Because of my kids' weights, the only way to get certain doses of abx into them is to use liquid, even tho they both prefer pills. The cost of the liquids is killing us!

 

 

Tinidazole (generic of tindamax) and fluconazole (generic of diflucan) have been notable exceptions to this, at least for me at the compounding pharmacy I go to. The generic liquids were much cheaper.

[MichaelTampa]

By the way... do you intend to keep the feeding tube? It is a good way to administer medication if it turns out it is Lyme. I would recommend keeping it in until you figure things out.

 

-Wendy

 

Well the feeding tube (G tube in her tummy) wasn't really a "choice" we made per se. It is her sole source of nutrition-she does not eat any foods orally. Her meds are already administered through the tube. Her esophagus is swelling shut due to an autoimmune reaction to foods. The tube has been in place since February so that we could remove all foods and try to turn off the autoimmune reaction. We return to Cincinnati in May for another Endoscopy. If the path report comes back clean then the tube will stay in place for years while we add back 3-4 foods in their purest form over a 3-4 month period and then rescope. According to her GI most kiddos only find one safe food out of the 3-4. It is a very long process. If the scope does not come back clean then our next step is swallowed steriods for life to help with the inflammation. This sucks because we will only be putting a bandaid on the problem rather than solving it. We hope to avoid the steriod route at all costs. Swallowed steriods means that you take the medicine from inhalers and mix it with splenda to make a slurry and then swallow it. You want it thick so it will coat the esophagus. NASTY! http://www.apfed.org/

 

LLM-So in response to your comment about diet and probiotics....No she is not on a special diet for inflammation, probiotics etc because she cannot eat food. Supplements also present problems because if I can find one that is safe it will have to be trailed. She also has 15 IgE food allergies including dairy, soy, gluten and pork. Pork is very important because pork=gelatin=gel caps which means no pills. Also products like glycerol, magnesium stearate, mono & di glycerides are pork derived. We have to have Tylenol compounded.

 

Her therapist has suggested breathing exercises, games to redirect her brain, petting the animals etc... IF we can get her to do them they work. Unfortunately for us there is no gradual build up before she explodes. It is literally like a switch flips in her head and once that happens there is no stopping her until she is done.

 

Iowadawn-Hi! Yes our appt is with the same physician in Grinnell.

 

 

My goodness, what a terrible situation! I want to let you know there are other ways of dealing with these allergies. There is therapy called "Allergie-Immun" that a number of people with lyme are using. It helps the body deal with autoimmunity issues by changing the person's DNA so that they recognize items for what they are--recognize food as food as heavy metals as heavy metals. Then the body stops fighting the food and starts removing the heavy metals. So it helps a lot with detox and food allergies. On the lymenet message board, there is an extremely long thread--you could probably not read it in a full week if that is all you did. Anyway, there is a lot of information there but I am just giving you the basics here of what it does. Many who try it are having very good results. It has been very helpful for me.

 

This Allergie-Immun place is in Germany, their website does have an english version. The cost is 450 euros, plus 10 euros for each bottle of drops that is needed. It works as follows. You send a saliva sample to them along with payment, and they send a bottle of liquid and a report on "DNA errors" they found. You take the drops 3 times a day for two weeks, then send back another saliva sample, and the cycle repeats until they find no more errors. It turns out to be about one bottle a month due to time it takes to ship back and forth from Germany.

 

I have found this very helpful, gave it a bit of a plug earlier. I am trying not to continuously push this somewhat bizarre sounding and somewhat expensive treatment. But, after hearing your daughter's food situation, feel like it's important you at least know about this so you might consider it. I think it is particularly helpful for those with lyme because, moreso than other infections, lyme really messes with your DNA, reorganizes it to its benefit and the person's detriment.

[sf_mom]

I believe if the sample is stored correctly Igenex can test for Lyme. I know they can do it with cord blood. You might call them about test kit and proper storing.

 

I remember hearing a story about a man who was very, very, very sick and had stomach issues. They could not find anything wrong with him. He came up serologically negative for Lyme several times with several different tests. He was wasting away and was about 120 pounds when they scoped him. They did find Lyme present in the stomach tissue. I believe he runs one of the support groups in NJ now.

 

-Wendy