Saturday, November 10, 2012

Natural Treatment for Tuberous Sclerosis Complex and Epilepsy, Part 1

 The doctor of the future will give no medicine, but will interest her or his patients in the care of the human frame, in a proper diet, and in the cause and prevention of disease.- Thomas Edison 

My inspiration for writing this. Audrey is 3, has a TSC 2 4-letter duplication, countless brain tumors, 2 heart tumors, retinal tumors, and various skin manifestations. We were told she would be unable to walk, talk, smile, or make eye contact, and that she would most certainly have autism. None of their predictions have been correct.


What is TSC?

Tuberous Sclerosis Complex is a genetic tumor disorder that affects 1 in 6000 people in the United States. It is caused by a mutation to one of two long genes that are meant to suppress tumor growth. These are labeled "TSC 1" and "TSC 2". Those with a TSC 2 mutation tend to have a more severe form of the disease. It is the leading genetic cause of autism, and it is one of the main causes of infantile spasms, a rare brain-damaging type of seizure that usually first starts in infants between 3 and 6 months. TSC can affect the brain, skin, heart, kidney, eyes, lungs, and rarely other organs, such as the liver. 

I had never heard of this disease, even though it is as common as Lou Gehrig's Disease, nor had I ever heard of infantile spasms, until three years ago, when my 3 month old baby girl was diagnosed.

One of the problems with the disease is that it is is a dominant genetic disorder, meaning only one parent needs to have the disease to pass it on. If the parent passes it on, they too have the disease, but may not know they have it, because of variable expressivity. A parent and child can have the exact same genetic mutation, whereas the parent may only have a few birthmarks or other small tumors that are not noticed or causing any harm. Yet the child can have a severe case with brain and heart tumors at birth, often developing skin, kidney, eye, and lung tumors down the road. Someone can also have TSC from a spontaneous genetic mutation during development.

 Why write this?

There are several reasons I wanted to write this article. First, I tend to be of the philosophy (backed up by our own experience and reading I have done) that allopathic (western/pharmaceutical) medicine is best used when treating acute conditions: heart attacks, stroke, broken bones, and other injuries...emergencies that need handled *right now*. They treat symptoms, not causes, but sometimes the symptom needs tending to immediately. However, allopathic medicine does very little to properly treat chronic illness, because it is treating symptoms, not finding a cure for the cause of those symptoms. I have always treated my family with natural medicines when available and appropriate and we have remained healthier and healed faster than those treating the same illnesses with western prescription drugs. I believe God has given us countless healing medicines in the world around us, that often work better than that which man creates. The body is inherently self-healing. The way to bring about true health is to provide an environment in which the body is able to do its work and not sabotage its efforts.

The second reason i wanted to write this article is because even in allopathic medicine, there  are very few drugs that either work to treat TSC and the other illnesses associated with it (like drug-resistant epilepsy), or that don't have very severe side-effects. When I began researching for natural treatments for TSC and epilepsy when our daughter was diagnosed three years ago, almost nothing came up in my searches. The information that is there is sprinkled in bits and pieces in forums and hard to substantiate.

I want to point out that I am not a doctor, just an overanalytical mother of a child with Tuberous Sclerosis that has had a fair amount of success at treating TSC naturally (in some cases only with natural medicines, other times they are used in conjunction with prescription drugs).  I will share our personal experiences and scientific research/studies where appropriate. If you or a loved one has TSC or you suspect it, I highly recommend contacting your nearest Tuberous Sclerosis Clinic, where there are medical specialists who are experienced in the latest advancements in treating TSC. And if you suspect your child is having infantile spasms, see a pediatric neurologist immediately, and take video of the episodes!

Types of natural treatment

There are many other types of alternative treatments beyond what is listed here, such as TCM (traditonal Chinese medicine), acupuncture, ayurveda (used primarily in India), homeopathy (not to be confused with naturopathy). But since I know very little about those and do not have much experience with them in regard to TSC, I won't be addressing them. These are simply the types of natural treatment I know something about or have personally had success with. I will go into more detail about each later as they are used to help various organ systems or symptoms of TSC.

- Diet. Proper diet is crucial in treating any chronic illness--even a genetic one. As I mentioned previously, two people can have the exact same genetic mutation and have very different expressions of the same gene. Much study has been done lately regarding genotype, phenotype (the outward expression of the gene) and epigenetics. In short, just because something is written on one's genes doesn't *guarantee* certain expressions of that gene will happen. Our environment can and does affect our genes and how our bodies respond to them.

-Herbs. Plants have been used for medicinal purposes since ancient times, and are even used to create many prescription drugs today. (Atropine is from Belladonna; Sudafed from Ephedra; though not truly a plant, but a fungus, Penicillin comes from the Penicillium mold; and pain killers such as codeine and morphine come from the Opium Poppy.) Countless other plants have been used traditionally the world over and in modern naturopathy to treat nearly every illness known to man. In fact, the medicinal properties in plants are so strong, that if used improperly they can interact with prescription drugs or other plants, they can cause horrible side effects of their own, or can kill a person. However, with any medicine, it can be healing and life-saving when taken properly and with caution. *Please consult a medical doctor or naturopath before taking any herbal supplements if you are taking any prescription drugs. Some of the most healing herbs tend to have mild blood-thinning properties. For the average person this is not a problem, but if you or your child is taking a blood thinning drug or certain steroids (like ACTH for seizures) it could be very dangerous. Other sedative herbs such as valerian are generally regarded as safe in proper doses for the general population but for those already taking anti-epileptic drugs, the combination could be dangerous. If you plan to use herbs, i recommend buying a book such as this one which contains information on the proper use and side effects of the most common herbs. One of the best places, in my opinion, to buy bulk herbs (and learn about them) is at Mountain Rose Herbs.com.

- Essential Oils. Essential oils are highly concentrated distillates from plants, containing some of the most powerful healing parts of the plant in a very small package. Essential oils can be used in aromatherapy (particularly when treating the brain; one of the fastest and most affective ways to cross the blood/brain barrier is through inhalation), sometimes they can be ingested (though make sure you only have 100% pure food grade and that the particular oil is safe for internal use), or applied to skin to be absorbed into the bloodstream. I have been casually researching and using essential oils for a few years now and am just beginning to understand how they work and are made, so be sure to get a book on aromatherapy or find someone who is trained in it. One of the benefits of essential oils is that they are very powerful, yet less likely than herbs to interact with prescription drugs. More on this later, but some essential oils that are safe for the general populace *can and will cause seizures* in those with epilepsy. If you have epilepsy, you should never use those oils. I will provide a list of oils to avoid when I address natural treatment of epilepsy. High quality essential oils can be purchased from Mountain Rose Herbs (see above), NaturesGift.com, sunrosearomatics.com, or aromaticsinternational.com. If you search for essential oils on the internet, almost all the information that comes up is from one of two companies (I don't need to list them; it is easy to figure out.) I used to use the oils of one of those companies. After more research into how exactly essential oils are made and what makes a good quality essential oil, I will no longer use oils of either company due to inaccurate data they provide on their products and what I believe to be shady (at best) marketing practices, not to mention their oils are ridiculously overpriced. For instance: companies that claim their oils are "Certified Pure Therapeutic Grade (CPTG)" are using a clever marketing scheme, because they have created the companies that certify their own products; they certify themselves. Some will say "the government" certifies them, but the FDA is not at all involved in the testing or certifying of essential oils. There are also not "grades" of essential oils, just ways in which they are distilled (steam distillation, CO2 extraction, cold pressed, etc.) and different ones have different benefits depending on the need. An oil should say that it is 100% pure essential oil, meaning there is no alcohol added to it, or other oils. For instance, some much cheaper versions of frankincense found at Whole Foods contain essential oils of frankincense bark (not resin), and it is diluted with jojoba oil. While probably still therapeutic and beneficial, it is not true frankincense essential oil. Just read your labels. You can also test the purity of an oil by putting a drop on a piece of paper and waiting for it to evaporate. Once it does, if there is a ring, it is not a pure essential oil (since essential oils are not technically oils at all, but a true oil would leave a ring, as would alcohol.)

- Vitamins and Minerals. Due to our American diets and conventional farming practices that have pulled much of the nutrient content from our soils, many Americans are deficient in certain vitamins and minerals that affect one's immunity and particularly one's brain function. This is particularly important when dealing with many of the symptoms of TSC brain tumors: epilepsy, autism, other neuro-behavioral disorders, cognition, development, neuralgia, and sleep. The benefit of taking vitamin and mineral supplements is that assuming one takes the proper dosage, there are virtually no side-effects and they are unlikely to interact with prescription medicines, since they are required components for survival and typically found in food.

- Probiotics. Probiotics refer to the beneficial bacteria lining the intestines of all humans. Without them we would cease to live. They compose a large part of our immune system, and they contribute to not only healthy digestion and absorption, but also a healthy brain. Certain vitamins and minerals are produced by these bacteria, and many of these bacteria produce GABA, one of the primary inhibitory neurotransmitters, important in controlling epilepsy and hyperactivity. For young infants, we had drastic improvement in colic symptoms (as in, they disappeared) with Klaire Labs Therbiotic Infant Formula Powder. One dose is 1/4 tsp. To give to our 2 month old, we mixed the dose with expressed breastmilk and then administered with a syringe. She never complained. For adults (we also give it to our children, though some recommend halving the dose), we like Nature's Way Primadophilus Optima. When choosing a probiotic, the key is to find one with both bifido- and lacto- species (i.e. l. acidophilus, b. bifidum), as they do slightly different things. The more species, the better, the more CFU's (colony forming units), the better...at least 1 billion CFU's per dose, though we always used much larger doses. The infant probiotic contained 10 billion CFU's per dose, and nature's way contains 35 billion CFU's. If you take a strong probiotic and start feeling like you have the flu shortly after, this is most likely a die-off reaction. You can cut down on the dose until the symptoms disappear and slowly build up to the target dose. When "bad" bacteria and yeasts die, they release toxins that in large enough doses can make you feel sick. It's rarely dangerous but you can feel horrible. Just something to keep in mind. If this happens it just means you *really* needed the probiotic!

-Fish Oil. There is a lot of debate as to the benefit and safety of fish oil and which brand or type is best, but we do know that Cod Liver Oil, Krill Oil and similar oils are very high in omega-3 fatty acids, which are believed to be critical in proper brain functioning, among other things. We have just started giving Cod Liver Oil to our daughter this week, but there are lots of parents that swear by it for treating epilepsy, autism, and behavior, which is important to many dealing with TSC. One highly recommended brand of Cod Liver Oil is by Nordic Naturals. As we are just starting this, if any of you reading have had any success treating neuro-behavioral issues with cod liver oil, i'd love to hear your stories!

- Chiropractic. A good chiropractor does not just "crack your back." Chiropractic works from the understanding that everything that happens in our body happens as a result of messages among neurons between the parts of the body and the brain. The brain tells the immune system to act in a certain way, nerves pass messages between the brain and organs on how they should function. If there is a blockage, pinched nerve, etc among one of these neural pathways, the message cannot get through, and it can create disease. A good chiropractor can help with any illness through properly adjusting the spine and sutures of the skull, as well as the extremeties depending on the condition. Though technically a separate form of treatment, I will include craniosacral therapy (CST) in this treatment, since many chiropractors are trained in CST (our chiropractor had used CST on our daughter with much success, more on that later.) For a local and international list of chiropractors who are trained to treat infants and children, go here.

Specific therapies for TSC and its symptoms

This is certainly not an exhaustive list of the TSC symptoms/manifestations or of the possible natural treatments for them. I am hoping that others will read this and add other things in the comments that they have had success with. Again, I am primarily focusing on the TSC manifestations we have dealt with to date, and the treatments we have used for them.

TUMOR GROWTH

Technically speaking to "cure" Tuberous Sclerosis Complex would involve being able to change one's genes. Theoretically this is possible but no one has found out how yet with this illness, so in the meantime, everything is dealing with symptoms. However, something can be both a symptom and a cause. Tumors would be the primary example of that with TSC. Tumors are not the disease; they are the symptom of the disease. However, the tumors can be the *cause* of other manifestations of TSC, such as epilepsy, breathing difficulty in the lungs, heartbeat irregularities, etc. If one can find a way to shrink the tumors *or* prevent future tumors from growing, many of the problems associated with TSC could presumably be avoided.  There are *many* plants that have been shown to have anti-tumor properties, so regarding tumor growth the first place to look would be with herbs and their derivatives (essential oils, etc). 

Scientists have done much research on three plants in particular, regarding their anti-tumor properties:
- Turmeric (Curcuma Longa
- Red Clover (Trifolium pratense) 
- Frankincense (Boswellia) .... there are many species in this genus, all are therapeutic

The primary active ingredient in turmeric is curcumin. It has been shown in studies to prevent cancer and tumor growth by preventing angiogenesis (the production of blood vessels) within abnormal tissue, and by encouraging apoptosis (the programmed death) of abnormal cells. It is also highly anti-inflammatory and is a strong antioxidant. One very interesting study actually performed a "knock-out" of the TSC 2 gene (making the TSC 2 gene, which inhibits tumor growth, unable to function...in essence, causing TSC in a lab). Afterwards, they found that curcumin still worked as an mTOR inhibitor in this "TSC" environment. mTOR inhibitors prevent tumors, among other things. Afinitor is a pharmaceutical drug first used as an immune suppressant for organ transplants, that has recently been FDA approved for the treatment of many symptoms of TSC. It has been shown to shrink established TSC tumors in the brain, face, and kidneys. This study shows that curcumin did the same thing in a lab, likely without the nasty immune- suppressing side effects of other mTOR inhibitor drugs. One can supplement with turmeric by cooking with it, though some children may not want to eat curried food every day. There are various brands that carry curcumin and turmeric in supplement form, however it tends to have low bioavailability on its own (not well absorbed/used by the body). There are scientists who believe this is because curcumin needs to be bound with fats in order to be properly absorbed. So, in fact, cooking with it is one of the best ways to reap its benefits, but it is hard to quantify how much one receives each day if used in this manner. Researchers at UCLA discovered that there was better bioavailability of curcumin if bound with a fat, and so a few manufacturers now offer a version of curcumin that is created based off UCLA's research. NutriVene Curcumin LongVida is one such brand. If cooking with it, it is also believed that black pepper can help with the absorption of curcumin. We have recently started using NutriVene's brand of curcumin, and before that, just cooked a lot of curry. :-) As we are simply using it at home with various other natural treatments simulataneously, I cannot use our daughter as proof that it works, but I find the current scientific evidence compelling, so we continue to offer it to her. We also use it for its neuro-protective properties, which I'll address in the epilepsy section.

Red Clover
Red Clover is high in isoflavones, which act like estrogen in the body, and it is high in various vitamins and minerals. Some studies have suggested that red clover can be used to treat breast cancer and other forms of cancer, yet because of its high phytoestrogen content, others worry about its safety. Most herbalists would argue that the other active constituents in red clover would help prevent negative side effects of estrogen use alone, and that the whole herb is better than the sum of its parts. The reason I list this here is because it is also believed by herbalists to help heal skin irritations, psoriasis, eczema, diaper rash, etc, and for this reason could be used topically to at least calm the inflammation and irritation of angiofibromas, if not also shrink the tumors themselves. I have read on various herbal websites and in an herbal textbook of red clover being used to treat fibromas, but I cannot find any scientific evidence that addresses this one way or another. I am currently making red clover and calendula-infused oil with which to make a face cream for my daughter to treat her early angiofibromas.  I figure it will smell better than using topical frankincense essential oil on her face. I will take photos along the way to see if there is any change, realizing she is also taking curcumin and frankincense :-) Definitely not proper scientific method of "only one variable"...But I am far more interested in treating my daughter than doing experiments. This brings me to...

Frankincense
Frankincense has been used medicinally since before the time of Christ, and is currently used medicinally and in religious ritual in many parts of the world. It is the hardened sap of the Boswellia tree, found in some of the hottest, harshest parts of India, middle east, and north africa. The resin can be chewed, smoked, used as incense; or one can make a decoction (boil in water) or use the essential oil. For a while we were using frankincense essential oil topically on Audrey's angiofibromas, and they disappeared! Completely! They were this way for almost a year, and are just now starting to come back. I stopped using it, as i thought it made her smell like an old woman's attic. :-) Various scientific studies have been done on boswellic acid, one of the active constituents in frankincense. They have found that it causes apoptosis and halts angiogenesis in abnormal tissues. Other studies showed epigenetic effects in cancer cells. Frankincense has a long list of health benefits that we are only beginning to scientifically understand. It is also used for treating pain. One important note is that while my daughter is proof in my mind that frankincense essential oil has beneficial effects in tumor reduction, it cannot physically contain boswellic acid unless they are somehow added back in after the fact. Frankincense essential oil is almost always produced through steam distillation. Essential oil is comprised of the volatile components of frankincense...that is, the most fragile, lightweight elements. Boswellic acid is a triterpine, and is simply too heavy to rise in the steam during the steam distillation process, to be collected with the essential oil. I am sure there are other active anti-tumor constituents in frankincense, but if you are specifically looking to try boswellic acid, you will have to look elsewhere. There are boswellic acid tablets available from various companies, and the actual resin is available for sale online (in India and north Africa it is chewed like gum). 

Hopefully some of this information is helpful. Considering the amount of information, I will be splitting this article up into at least three parts. Soon I will write part 2, regarding natural treatments for epilepsy (most of which we have tried). Epilepsy seems to be one of the earliest and most devastating symptoms of Tuberous Sclerosis, and hardest to properly treat. Please check back sometime this week for part 2 on Epilepsy, and if you have any comments or any alternative therapies you've tried yourself particularly for halting tumor growth, please share!
 

12 comments:

  1. We are using Nordic Naturals Cod liver oil for Asher too! I really believe it has helped him move along with his texture issues in eating. Although, Asher is still having speech problems:-/ But love the Cod liver oil and am so glad we started doing it! We've been using it since July every day:-) Thanks for posting this Heather! I love reading about your research....

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  2. I can't wait to read the next parts to this article- particularly about diets and supplements. What does a day in the life of your daughter look like as far as food/drink/supplements? What traditional meds is she on or has she tried? My 4yr old daughter, who has TSC with a SEGA, has frequent focal seizures but is otherwise developmentally on target. She started out on phenobarbitol which was horrible and we stopped at a 19months when she went status for the 2nd time while on it. We switched to Keppra which caused some serious aggression until about 2yrs old, when we finally realized the impact it was having on her/us. She then transitioned to Trileptil, which worked well but we had to keep increasing doses bc her liver processed it so well- she maxxed out on that (little sleepy/dizzy spells clued us into that) so we've had to decrease that and have now added in lamictal. We've definitely gone down that rabbit hole of not knowing what symptoms we're seeing as a result of side effects, and what is a result of her TS! We've just started learning more about "healing" therapies (DNA repair)- specifically sound therapy using crystal bowls. Have you tried that? We just started listeining to it with our daughter- not sure of its benefits yet, but it is very pleasant and calming to listen to. We're making an appt for CST soon as well, as we've been hearing more and more about its benefits. If I wasn't so scared of her going into status, I would have her admitted and strip her body of all these meds and try only natural methods...the two times we've traveled by ambulance with her in status have us too scared to go there, though. We have an appt at our TS clinic in Boston Children's tomorrow and I'm scared tell them we'd like to try introducing natural, alternative medicine. How does your TS clinic handle your choices, or how did you broach them with this idea? Finding this blog on google was an answer to our prayers and I can't wait to read more...thanks so much for sharing!!!- Allyson (I use my son Zack's google acct)

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  3. Allyson thank you for the reply! I have written the 2nd installment in this series, and I did address diet, but didn't get to supplements...that will be in part 3 (just so much to cover, it got way too long!).at the end of this i thought about sharing a brief synopsis of our history with Audrey, though I'm also writing a book but who knows if I'll even finish it this decade, LOL. But, to answer your questions: as for probably most people with TSC/intractible epilepsy, our routine has changed many times. Currently, she has Sabril 3x a day, taurine in the morning, along with L-Carnosine and Cod Liver Oil. At night she takes a strong multi-vitamin and Curcumin along with her Sabril. We are a strictly wheat gluten free home, and until very recently, it was dairy free as well.and when life is not so chaotic, I try to follow the GAPS diet (I explained the diet in part 2), we cook a lot at home, but I won't lie...the kids do get McDonalds fries far more than I'd like to admit when we're running around. I am trying to change that. There's MSG and all kinds of awful stuff in that food that is bad for her brain. At one point she was seeing our chiropractor twice a week, and then once her seizures were better controlled, we dropped that to once every other week. She has not been in a while since we are preparing for brain surgery and part of that will require her to seize while hooked to the EEG so they know which tumor to go after...I was afraid if i kept going to the chiropractor, there was the possibility of Audrey not having seizures while hooked up to the EEG..All of these things never made her completely seizure free, but we did get her down to one seizure every other week, when at one point she was having 40 seizures a day, was diagnosed with LGS (that diagnosis was taken back as all the symptoms and brain wave pattern ahve disappeared), etc. In the past she has been on: phenobarbital, ACTH, Topamax, Keppra, Clonazepam, Sabril, and Banzel. At one point she was on 5 meds at one time. Now, she is only on Sabril and doing better than ever, btu still not seizure free which is why we're going the surgery route. Currently we do not go to a TSC Clinic because she has Nevada disability medicaid and we have to see someone in our state and the nearest TSC Clinic is at UCLA. However, all her doctors know a lot about the condition, and her pediatric neurologist is the only epileptologist in our state, and he did his residency at Loma Linda, which has a TSC Clinic there. Our doctor has had sort of a "let's try it; can't hurt" approach to the alternative treatments we have used. I think he realizes I know my daughter well and am well read on these things, and so he provides the expertise on the meds but ultimately agrees I am her mother and I make the decision. There are times he has wanted to add on another med, and I said no, so he said "ok" and didn't fight me; other times i wanted to wean off of a drug, and he was afraid to, so as to not rock the boat, but I said I wanted to so he gave me a schedule to wean her off of it. Mostly we've been in agreement as to how to treat her. His specialty is in prescription medicine, not herbs and chiropractic, etc, but he never poo poo's it either. Whenever I have asked him about a certain supplement, etc, his response has been "can't hurt.." I have not heard about the sound therapy, but I have read about the dangers to the brain of fetal ultrasound, how it damages the DNA, so the opposite seems like it could work theoretically. I would be interested in any articles or information you have about it. I highly recommend the CST, by the way. Standard Chiropractic helped her, but once our chiro started doing CST on her, her seizures became WAY less frequent. It was incredible! I'll write about that in part 3. Blessings....

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  4. Thanks for all the info, and for being so dedicated to sharing what you know. After our clinic visit, we ended up weaning my daughter off one of her meds that we think was causing some side effects, and then increasing/spreading out the doasge of the the other. My husband and I made a committment to go with a strictly organic, Non GMO, and reduced gluten diet with her- no chemicals in or on her body that we can control- thanks to your blog she and I are "poo-free" and loving all the benefits of coconut oil, baking soda, and vinegar.. those changes, along with this nw sound therapy, and she has been seizure free for a week (can't remember when that was true before). Also sleeping through the night (which I'm not sure she's ever done), eating breakfast regularly (also a 1st) and all her teachers tell me it's like a fog has been liften- she's more engaged and alert, and has wonderful spirits! I'll be tuning in here often- we love the kale chips by the way....it's an amazing thing to get a 13yr old to eat kale, bt even more amazing when his frineds love it too!! Thanks a bunch!!

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  5. I forgot to give you the info on the sound therapy- it's all based on the solfeggio frequencies:

    http://solfeggiofrequencies.net/

    and this is that crystal bowl cd. http://www.healingsounds.com/healing-sounds-online-store/crystal-bowls-chakra-chants-cd i was only able to find a few crystal bowl cds off torrents but that one was the most enjoyable that i came across but there's far more listed on their site. i imagine the quality of the recording is probably better on their cd as well.

    and a short video on solfeggio cymatics http://www.youtube.com/watch?v=cbDn1qvU81c


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  6. I am looking for the best mix of essential oils for facial angiofibromas.
    Thank you!

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  7. Found your DIY recipe for angiofibromas! Thank you
    http://crunchymomu.blogspot.com/2012/12/my-latest-diy-adventures.html

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  8. This comment has been removed by the author.

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  9. Hi,

    We have a little girl 7 months old with tsc diagnosis, would it be possible to exchange with you in private?

    Thank you

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    Replies
    1. Patrick, I'm always up for talking with other TSC parents! My email is heatherrlittle (at) gmail (dot) com. :-) Sorry I'm just now seeing this!

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