My daughter was born with Salt-wasting congenital adrenal hyperplasia, she has developed a Gi bleed at 2 weeks old, corrective surgery at age of 9months, diagnosed with Hypothyroidism at age of 3. Once The thyroid disorder happened she gained weight until she is morbidly obese. We watch her diet, try our best to do what 's right and then last December she had Sinusitis so bad her eyeball looked like it would pop out. Her pressure against her head was +55mmHg. They couldn't even measure it. We had seen so many doctors prior to this intracranial pressure and none of them did anything. Thank God for that doctor at Children's Hospital. Dr.Sulfton , I am forever in your debt. Pretty much, if you can't tell, how am I supposed to get help for my daughter when NO One know what she has? Unless we get lucky, but EMTs don't carry Solu-Cortef shots. I have 10 distributed through my family. There is an overwhelming intense feeling that I won't be there, someone won't give her the shoe, Medical professionals not do anything and argh...! It has happened , a little girl actually died in the Er because they were not aware. I just wish I had more resources here in Louisiana. Can anyone help?
Make sure the solu-cortef shots are kept in places where they are not going to be hot (ie not in a car) or it will be rendered useless. It is currently illegal for ENTs to give solu-cortef in all states but NY now, but they are working on changing that with legislation - perhaps you may want to get involved in the letter writing for your state.
Do you also keep salt tablets as well on hand? They may help as she is salt wasting. I take salt daily.
Does your daughter wear a medic-alert bracelet? That way anyone would be alerted to her condition. They have products for children - tags that tie on to shoes, etc.
I carry a kit with me that has my solu-cortef, alcohol pads, needle, instructions on how to give the shot (in case it has to be a family member), anti-nausea meds, extra cortef, contact information.
If your daughter gets sick at all, you have to up her cortef - and be guided as to how much.
I am panhypopituitary - I take cortef, thyroid etc.etc - so it takes a lot as an adult, so she will have a lot of meds to balance.
Yes, we do have the Solu-cortef shots, we have them at her school,parents, dad's and I carry a kit with me. We also got the tags for shoes from the Caresfoundation.org. I don't have the anti-nausea meds and I have electrolyte tablets. I also bring an extra cortef prescription. I have her kits encased and I put stickers that don't like to stay all over them stating that this is an EMERGENCY KIt.... What kind of emergency kit do you use? My daughter also has developed Hypothyroidism at age of 3. How do you handle your thyroid meds and do you take Florinef?
Most every one makes up their own kits - some people even use eyeglass cases to hold the stuff.
I have a pre-printed list that has my med, when I take it, why, who prescribes it. I give that to every doctor I see.
I buy those pill thingys in the drug store - the seven day a week things, 4 compartment a day things. I put out all my meds for one day in that - because some meds are no eat, some eat, some conflict etc. so it was a nightmare trying to get all the stuff right so that everything was in order so that I could take it all and not have one thing cancel out another. For example, I need to take calcium and thyroid meds - but cannot take them together, so I take thyroid in the morning, calcium at night (and make sure it is a formulation I can take without food). It took a bit of work with the pharmacist and the doctor to do this but do it. When I add a pill, even something silly like I had to take something for my stomach - it was crazy how to add it where it would not negate my thyroid or my cortisol meds - plus it had to be on an empty stomach so I was ticked as I thought I would have to wait 3 hours to eat every morning by the time I took every pill "set". I asked the pharmacist.
I take my thyroid in the morning with a few other pills agreed on by my doc, wait an hour for eating or other meds, then take more meds, at 2 take more cortef and some T3 , more meds at night.
Hey again, Gabs got discharged last Friday from intense intracranial pressure again. They increased her dosage of Diamox and started Metformin,
-So now the tally of meds are:
Thyroid and Fludrocortisone only 1 X a day, HC 3 X a day Metformin and Diamox 2X a day. And we also have the option of giving her Welbutrin, 1x a day to see if it helps her in school.
I know I need to review with her pharmacist because I really want her to benefit if she has to take all these meds. I am just a little overwhelmed and venting, sorry.
Anywho, how is everything?! Gabs and I are going to the NIH in May for a natural History study. Nothing experimental, just research, and they are hopefully going to be able to help us. I feel a sigh of relief, there is hope, always hope.
I read your posts from time to time and I believe you are a downright genuine soul, and I appreciate your time chatting with me. Have you ever been to a NIH clinical trial?
Will you be my sound mind if I get thrown a curve ball while we are there?
Alas, NIH will not take me as I have has surgery... 12 of them at this time in fact... so that avenue is not open to me. I did try though before but most docs would not sponsor me as they said I was not sick. It was an NIH-trained doctor, however, that finally diagnosed and helped me. How funny is that!
Why the HC 3x a day and in what doses? I ask since you read my posts, you may have read some about the normal diurnal rhythm - and that would mean that if you do that, you have the possibility of messing it up, and that could well, make things worse. Normally, one takes it in 2x a day dosing, not 3x unless you are breaking it up into increasing smaller doses each time... I tried that for a while but frankly, it was more of a pain to remember to take it than the sort of energy I got from it!
I frequently consult the doc or the pharmacist on my meds and schedule.
Do you have the list written up - med, dosage, when, why, who prescribed? I keep that, my allergies, and my list of surgeries on a piece of paper that I just hand to docs. They love it. It makes it easy to change and besides, when you have so many, they don't fit in the small space on the dang form but "see list' does!
I don't know if my husband will agree about the sound mind (not today anyway - had to get a steroid shot for hives - so the rash AND the steroids and making me crazy!!!) but I try to help whoever, whenever, just like people helped me, and hope they go one to help others!
Keep in mind if she is starting florinef, it pays to move up on it gradually or you can swell up a lot... take it easy with that med. We call it the florined fluffies.
That is crazy what you said that about the Florinef. No they did not take it slow, and I looked online to find info on what's going on with her condition and find that out!
I feel like these doctors should know this stuff. Its a learning hospital, usually they figure it out. But NIH I believe, will help us. That's crazy that they wouldn't take you cuz you were not sick. I am under the impression that it all has to do with funding, because I have been calling for a year now and just got accepted to go. I overheard they had just got a 4% increase in their budget (I think).
Anyway, as I am searching for credible resources for edema, papilledema, pseudotumor cerebrii, etc. I come across hyponatremia. I wrote on her lab work to check for Na+sodium levels in her 24 hr urine collection, (which I think upset them, but I needed to know) Well, it was extremely high, within normal range is 20-69mMol/mL hers was 262, and had a big capital A next to it. like this --262A mMol/mL-- What! these are levels compared to the levels of Na+ in her blood to be normal. Yes she is a salt-waster, but I believe this intracranial Pressure building up is because of osmosis, homeostatsis thing that all of our cells do in our bodies. She could have extracellular fluid that her kidneys cannot keep up with so hypovelemic hyponatremia shows labrynth of channels that can end up causing her to be worse. I truly believe she is receiving treatment too fast for her body to adapt, and something bad could happen.
Actually, I have a very good feeling that she has hyponatrea. Sounds crazy to them, but Gabs has always had increased thirst. Strictly breastfed for 13 months, because she threw up everything else, then drank the heck out of water. I am talking, before I sit down to eat with her, I make her two glasses of water, so I don't have to get back up for it. Both glasses are pretty big too, 16oz . From age 1-3 it was fine for some reason, no crazy side effects of water intoxication, but as I have discovered, her blood work results have been erratic ever since diagnosed with Hypothyroidism. Even that could be erroneous because of extracellular fluid, glycemic, hyerlipidia. All of his could have been prevented, but lack of knowledge and resoucres down here is horrible.
I am so sorry, I am venting.. I need to finish this e-mail I started to a lady from the magic foundation. She has had a lot of the same diagnoses you have as well, and she is the help resource lady for them, her name is Stacy. Thank you for listening, feel free to pass along to trustworthy people about Gabbi's condition. I can send you our info and if people who are genuine and trustworthy want to help.
And If find anything out at NIH that can benefit everybody, I will share what I can in resources. Overdoing it now, thanks again,
Oh she has always taken HC 3x a day. Actually before she was hospiltizated for increased CSF, I was working with her endo of doing 15mgs in the morning and 10mgs in afternoon. We take now 10mgs morning, 5mgs at noon, 5mgs at 4 or 5pm.
Fludrocortisone 0.1mg in the morning.
I give the Levothyroxine @ 5 am and let it work (which I found out online as well, you're suppose to take it on an empty stomach)
She has other medicines we incorporate, Metphormin Diamox,
Just recently found out from reading your posts about not taking thyroid med with Hydrocortisone...
I feel like Louisiana is the last to know anything medically advanced. What is the deal.? I am willing to move, actually I have been dying to move, mainly for help.
She is morbidly obese at 7!! Her weight just now started maintaing at 99-100 lbs. She has dieted, done Trim Kids, been on only protein diet,only 1200 calorie diet to only 1000calories a day diet, starving still gaining weight!!! She has weighed up to 104lbs withing the past year. In December she went down to 98 lbs, this is after throwing up and not eating because of the intracranial pressure for 2 weeks. starting around November 13th, she started with mild headache and threw up at school, then it cascaded in doctor after doctor.
With all the drinking - I wonder about diabetes insipides (water diabetes, not sugar) and SIADH with the salt imbalance.... look up those. Check out ADH and the you SIADH is a restriction on water until the sodium comes down.
I know Stacy. I will see her again in June. LOL... She is cured, she does not have the residual issues that I do... but she is very sweet.
Wow, I read you would be out for a bit. It is so good for your soul to regroup. Thats what me and Gabs had to do. I was veryupset as you can see with previous posts. Anywho, I hope you are doing well. I just got to see your pics. I really like the leftpover meds pic. Thats hilarious. Me and gabs should do that. Our trip is soon to MD. Wish us luck and I to you as well. Peace out.
Did you know that steroids depress adrenal function? I developed serious adrenal fatigue after taking inhaled steroids for asthma. I have been under treatment for that since August and am still not completely OK. It may take another year.
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