|
Post by cmcgowan on Dec 3, 2008 22:09:14 GMT -5
Hi Everyone,
I have a question for all those who have had more children after there hypopit child. (meds GH, TH, Cortef) We are expecting a new baby boy this march and am very excited, but also terrified at the same time that we might have to go through all that we went through with Keirsten 3 1/2 cpan and not dx until 1years old. I know the chance of this one having panpit to be very slim, but was wondering if any of you parents took extra precautions after the new baby was born? Example extra labs done before you left the hospital just to ease your mind? I don't know if I could sleep not knowing that there could be something wrong. Maybe I am just paranoid but would love all your info.
Thanks so much
Carolyn mom to Keirsten 3 1/2 cpan, Devin 7yr, Lauren 5yrs and new boy due in March
|
|
|
Post by Lethal Lee on Dec 15, 2008 3:06:31 GMT -5
Hi Carolyn,
Congratulations!!!!!!!
Sorry you havent got any replies to this post. Are you a member of RTH? Theres a Childrens subforum there so you may get a reply there or on RTH general subforum which is very busy.
I see you have 3 children already. Is it only the youngest with Panpit? Have the other children had Adrenal & Thyroid testing?
I dont know how much genes play & how much environment plays in all this.
I am Hypopit with Secondary AI, HypoAldosterone, Primary Hypothyroid with Hashis, and low in all Sex Hormones (Menopausal) have Hemochromatosis & MTHFR Gene mutation.
My Twin Sons both have Hashis & Primary Hypothyroid, Hypopit with Secondary AI, HypoAldosterone, Hypogonadal for Sex Hormones, MTHFR Gene mutation. We all have 'in range' Adrenal Antibodies as well.
Add to that have just completed all testing except ACTH Stim (will have next month) on my DH. Turns out he is Hypopit with Secondary AI, Secondary Hypogonadal, HypoAldosterone, Secondary Hypothyroid with elevated Thyroid Abs (Hashis).
I strongly suspect the Twins half sister is at least Hypothyroid due to her symptoms as well.
So how much is an inherited suscepability? Who knows?
|
|
|
Post by cmcgowan on Dec 15, 2008 14:50:53 GMT -5
Thank you for your post. I don't belong to RTH. How do I join? I do belong to another one that does seam to be mostly children health.groups.yahoo.com/group/panhypopituitarism/Did not get much of a response to the question on there ether. Both my other kids have been tested for they are very small for there ages also, but not like the youngest. It sounds like you have your hands full not just taking care of your self but everyone else. I feel like I do with just one. We went to the endo on Friday and have now added a new med DDAVP. So that makes five and that is enough for me. Thanks again for your response. If it was not for the two groups It might of took longer to get Keirsten tested for the DI. What is MTHFR Gene mutation Thanks Carolyn
|
|
|
Post by Lethal Lee on Dec 16, 2008 3:13:51 GMT -5
Hi Carolyn, Yep hands full alright. Especially as they all dont wanna know anything about it just leave it to me to get the meds & supps monitor symptoms make adjustments do the research etc etc. Anyhow to join RTH just go to the link below. You can post as guest or become a member its up to you. forums.realthyroidhelp.com/index.phpMTHFR is a gene mutation. Having two copies is a lot worse than one copy and is usually picked up soon after birth. We all have one copy of the mutation. It means we have a lot of trouble making ACTIVE Folate so have to supp with it daily for LIFE. Folic Acid is a synthetic and is NOT active. We supp Folinic Acid which is active form. If unable to make active Folate risk having elevated Homocysteine and unable to utilise B12 properly too. This puts you at increased risk of Heart problems. By the way MTHFR is a VERY common Gene Mutation estimates as high as 46% of population but Docs rarely test for it. Same with Hemochromatosis it is much more common than people think but rarely tested for. Lets face it most Docs rarely even test Ferritin!!!!! I have ONE copy HH mutation but still have hemochromatosis symptoms & Iron loading.
|
|