2 weeks in hospital, fighting seizures, gut problems, swelling and tremors.



Feeling like we’ve really hit a wall of what can be offered to help Dusty, and its hard to swallow. No one can tell us a time frame of the progression of her illness …

40 Comments

  1. hello you have an adorable baby but a tip do not let her get too fat it could affect her health later on in my house there is a girl who since she was a baby and they let her gain a lot of weight is going to be 9 she is overweight exaggerated heart problems and she is very tired I know that you girl is sick but you stack with that because later you would affect her health and eye some doctors say that she is well of weight but it is not true ok

  2. I noticed she's got a lot more speech than my 14 year old nephew has. She's talking in sentences and my 14 year old nephew only has a few words here and there. His mom and stepfather think he has oral motor apraxia so he is not very verbal at all so they're working on getting him an aac device so he can communicate better with everyone.

  3. Hopefully you guys are all settled in at home! She’s got good tastes in afo colors! Does she go to a children’s hospital or just a regular hospital with a children’s ward? I’m only asking because I definitely feel like the care we get at the children’s hospital here is better than the pediatric ward in one of the regular hospitals. I’ve also got MCAS and the only formula I could tolerate was the the infant elecare. The junior and all neonate made me very ill. I’ve hear that some of us tolerate Kate Farms. I’ve not tried it though and don’t know if you can get it there. There is also a special enzyme cartridge that can be attached to her tube feed to aid in breaking the formula down more. Have they checked her cortisol and fatty acid levels? Our overactive mast cells can cause our bodies to release too much of over 200 mediators. So even though she is not on steroids, her MCAS could be signaling her body to make too much cortisol, hence, the puffy face. I don’t know if it was a big deal in Australia, but in the US about 10-15 years ago we were bombarded with baby formula ads saying now with dha/ara. When they checked my fatty acid levels I had several deficiencies, but my levels of dha were astronomically high. It turns out that the precursors to dha are prostaglandins which are often high in MCAS patients. It’s definitely a possibility that the amounts of dha in Dusty’s formula could be causing some of her issues. Have you checked out the list of histamine in foods from the mastocytosis society? There is absolutely no good solution to getting a well balanced diet with severe MCAS. You should talk to her doctors or dietician before making any changes to Dusty’s diet. But if you can find even a couple of histamine free foods she can tolerate in tiny amounts, it will be beneficial in the long run. What would be even better is seeing if you can find enough safe food to make your own “formula” so that she could greatly decrease the commercial formula. It can be very hard and frustrating to find a perfect balance. I was on j tube feeds for 10 years, but had to go on tpn 7 years ago when the gastroparesis worsened. I now have intestinal failure and depend solely on tpn to meet my nutritional needs. Despite the word “total” in total parental nutrition, it’s anything but. There’s not enough calcium or iron. I’ve got untreatable osteoporosis and go in 1-2 time a month for iron infusion which comes with its own set of complications. We found I have just as many if not more problems since going on tpn. I’m severely allergic to the protein and lipids. I’ve not had lipids in several years and get iv Benadryl round the clock to keep the allergic reactions to the protein at bay. Tpn makes you sluggish and it puts you at very high risk for bacterial and fungal blood infections. I’ve been lucky and not had one in the last four years. Every time you get a blood infection, they have to do surgery to immediately remove the line and have a temporary one put in. Once the infection is cleared up, they do surgery to take out the temporary and put a new one in. Because you are at a high risk for infection, most doctors won’t put in a port as the surgery to take it in and out is more invasive than a broviac, Hickman , or picc line. Tpn is very hard on your body and often causes liver failure if you have no oral or tube feed intake. I don’t know about Australia, but it’s very hard to get a liver transplant when you have MCAS, as it’s the underlying cause of the liver failure and your body will most likely do the same thing to a donated liver. Once you’re in liver failure, the ball game is over if you can’t get a transplant. Tpn is fabulous short term for gut rest. Long term it tends to reek havoc on your body and should be avoided whenever possible. Thanks for the update!

  4. Hey I was wondering have u tried intravenous pamidronate. It's a medication that increases bone density. It is commonly used with kids who have Osteo geniuse imperfecta (brittle bone disease). My sister had brittle bone disease and this medication drastically changed her life. It increases the density of her bones which in turn made her stronger.

  5. Wow that just sounds like information overload. Glad that you finally got some answers and got to go home.😀. Hope she starts to feel better soon. Love you guys, keep fighting👊

  6. Dusty has the most beautiful voice 😍 I’ve been following you on instastories and am so glad you’ve been discharged.
    I hope people are reminding you of the AMAZING job you do every single damn day!

  7. Good to hear she is going home, I hope they find a solution fast, changing the ingredients because of bone densety could explain a lot, the same problems are caused by the ingrediends in prednison, so nice to hear Dusty communicating

  8. Dusty's speech seems to coming along so great! She seems very vocal as of late, which is nice. I hope she starts to feel better soon. Stay strong and don't push yourself too hard 😊

  9. If you have the time/energy I would be curious to see a side by side comparison of her AFOS and how their different/same.
    Im so glad that you guys are home now 💜💜

  10. So happy to hear you guys got some answers and are going home! Sending good healing vibes your way and Its so lovely to hear Dusty’s voice and what she’s thinking about 💕

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