Moms I Need Piece of Mind Please.

as the Mom of a child who battled physical disabilities.....& as the Mom of a daughter who passed away during her 2nd day of heart surgery.....& as the Mom of a child with untreated ADD & is highly allergic to peanut - - my heart goes out to you.

A lot of good responses have been posted today. I think the key to this is to RELAX & BREATHE....as others have already said. Sometimes, well - quite often! - we are our own worst enemies. I have found that actually going within myself & focusing on that breath going in/out.....helps me. Do it like you're in labor, but do it with slow/deep breaths. It truly does help calm the mind!

I do have one more recommendation: I rely heavily on research. By the time our son was 12, we knew we were headed for a hip replacement. I got on all of the mfgers websites, registered for their newsletters, & began researching new developments vs. documented patient outcomes. I also began researching recommended facilities & surgical teams. By doing this, I was emotionally ready for the surgery....which came at age 23.

But, as a word of caution, when you research....do not allow yourself to be overcome with fear & doubts. Take the time to respond analytically & not thru emotions. When you find something which scares/concerns you, take the time to really think it thru (prayer does wonders).....& really try to address what worries you most.

I believe in the power of prayer. I also believe that as parents it's our responsibilty to be our children's advocates....whether it's educational or medical. In today's world, this is a part of our job description. This requires research, dedication, fortitude, & faith. As one of the other posters said, special children are given to special people.....I wish you Peace.

As Tom Petty once said "the waiting is the hardest part" and it's true. Knowledge is power and information begets action. Right now you just keep loving on the little O. the same way you did before any of these issues came to light.
You sound like an awesome, caring, concerned mom on a quest for answers. Do you know how many parents would ignore or overlook signs and symptoms like you described? You're obviosusly on the ball and I'm sure you will make good decisions for your little O., if needed.
Keep in mind that MDs often give the worst case scenario. Keep breathing and stay calm. Peace!

Special needs children are only given to special parents. Whoever your higher power is He or She knows you can handle this.
I recommend picking up some books or movies (true stories) written by parents of special needs kids. Their stories can help you to learn coping skills and what to expect.
I promise you will be fine. Life will be different but sometimes different is good.

Remind yourself that no matter what comes up, you've already got doctors working on helping him. You are doing all of the right things and can take whatever the news is head-on and help your son. It sounds like you have insurance, since you're seeing experts, so that's also working to your advantage. You'll have the resources to give your son the best possible care and that can greatly improve outcomes, no matter what condition.

Best of luck! I hope you get some good news with the MRI that it's nothing serious.

Also, I have an old high school friend whose daughter has Alopecia and her daughter is doing terrific.

Forgive me if I'm wrong, but each of those diagnosis have a treatment, right? Try to visualize yourself getting the answer from the doctor, and how relieved you will be to know what to do next. Close your eyes and imagine what you will do after that. Whatever it is, you will do what you must, and you'll get through it.

It sounds like you are very in tune with your son, not all parents would have noticed this and pushed for the tests. He is lucky to have you to fight for him!

You might want to explain just a little bit of it to the older kids (in very small, age-appropriate doses) that their little brother might need a lot more attention from you for a while. That will help prevent jealousy & tantrums down the road.

Good luck, I will be praying for you. Please let us know what you find out!

Take a breath and remember that he's still the same sweet little guy that he was before he needed specialists!

If he has "something", you will have a "name" for it and if it has a "name" it has a treatment.

Take care of yourself- rest-breathe-have a glass of wine- take a bath- cuddle your boy... you can't really ease your mind b/c it's stressful, but just keep reminding yourself that lots of medical things sound worse than they really are AND doctors MUST tell you "all possibilities", many of which are quite rare and remote.

Okay take a deep breath, take another deep breath. Hold your little one and look at the perfection that he is. This may get difficult and overwhelming but just remember to breath and hug and you should get through.

Are you a woman of faith, any faith? If so, I would just pray to whomever you chose to pray to. If not, do you mind if others pray for you? It can really help ease your mind just knowing how much others around you care about your sanity and family's health. Maybe you can try yoga to help empty your mind, or just go on a jog... Exercise is relaxing to some people. Im so sorry you are having to go through all this with your baby :( Good luck!

Breathe! Breathe some more! Don't know if or what you believe, but pray and meditate and hold onto your little baby as much as possible-lots of cuddles and love-it's good for stress for all of you. If you can, enlist some help of friends or family with cleaning, errands, meals, whatever-so you can focus on getting through this.

Doesn't hurt to research things on your own too or evaluate any life factors that could have had an effect on the situation(ie: heredity, environmental, medical) Just don't drive yourself crazy with information!

Speaking as a sufferer of an auto-immune disorder since childhood- the most important precaution you can take in this case is no to overload his little system with ANYTHING. Be very circumspect about all the poking and prodding and medicating that is going to take place in an effort to find answers. Be your sons greatest medical advocate whether it turns out to be something big or small.

And know that people out in cyber land are thinking of and praying for you! Please be sure and update us on what happens.

If you don't mind I will pray for your family! Wow this can be overwhelming...No matter what he is your pride and joy and you are doing the best you can to take care of him and find the solutions necessary to get him well.

Holy toledo! What a huge bunch of big terms have been dropped on you.
Maybe it was a temor? Maybe he is just missing calcium.
Are you nursing? If yes, how is your diet? Not much time between #2&#3- so you may have been missing minerals for #3- he may need that.
Shane on the older doc, and the skin doc- may happen, could happen- yikes, that would make me crazy too.
Anything could, may happen- so I would not go there.
Personally I'd get Nourshing Traditions, and do the nutrition recommended there, and contact Standard Process-800-558-8740, and ask for someone in your area who uses these supplements- company been around since 1929- super company- and check for nutrition.
And pls remember that you must be very careful about who you ask questions- MDs only have drugs and surgery for answers, and there may be non invasive answers. And the big words fr MDs may be wrong. And drugs to a 5 mo old for something that MAY COULD happen, or MAY NOT!
the drugs can have permament effects.
And while you are having your child's nutrition ck'd, have yours as well- 2 babies in a yr&1/2- that takes alot of your minerals- get them replaced, and you'll feel better, too.
best, k

It is not easy for sure. You are going through a tough time. Find someone special to talk to (not just your husband) or have a journal to write down daily concerns or even pleasant moments. It could be your "wind down" time of day and pour your heart out. Keep it close to you in a safe spot. This should help you release your thoughts and feelings about the situation. Drink lots of chamomile tea to calm your nerves and any anxiety.
And as hard as it may be, try to focus on the now when you are with your child. Savor every moment you have together and truly enjoy the present time with your family, this can strengthen you. Moms always worry and this is a difficult time.
Find friends and activities to distract your 2yr old, release his energy outside or in a play group. School can also be a great asset even for this age. Good luck.
Always remember to pray!

WHATEVER YOU DO, DO NOT VACCINATE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
If you have already, STOP!!!!!!!
Get him on GFCF diet as he grows.
Do not let him be exposed to food toxins and environmental toxins. Every product you use on him has to be natural.
....just my 2 cents, as I work with DD kids and I know the dangers of auto immune problems. They lead to DD. Get him seen by an occupational therapist at this time, even though you may think he doesn't need it. The extra support for his motor skills will mean so much!

The best thing you can do for your little one is breath and pray for them. Breath and pray for them. Take a walk, cuddle your baby and know the doctors will get to the bottom of this--- Your job is to love and protect and care for your precious child--- try not to worry-- Until you have ALL of the facts, there isn't anything you can do or prepare for. Write in a journal and get some support from your pastor or church family. Best wishes~

M

So sorry you are dealing with this.

Auto-immune diseases run in my family, and though the ones you mentioned can be scary sounding they are treatable. My great-aunt with lupus, Hashimoto's thyroid disease and adult onset diabetes outlived two husbands and was independent well into her 80s.

I would definitely ask about a thyroid test even though it is more rare in children, since hypo or hyper-thyroidism alone can also cause hair loss.

It is so hard to let go of worry, especially when it is about your precious children. I've found prayer helpful when stressed:

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Oh...I feel for you...but just try to take it in stride. I have learned to really just be in the moment...so right this moment, is everything okay? Not thinking ahead, not thinking in the past...but right now. Are your kids happy right now? Are they well fed and safe. Just focus on now, because that is all you have control of. We spend so much time worrying, and much of it is unnecessary.

My son is now 18 months. When he was 6 months he was considered failure to thrive. I was completely devastated by that horrible terminology. It just means he is smaller than the "average" baby. I was told to see several different specialists, from a GI doctor to an endocrinologist, to a geneticist. We had to undergo lots of different testings, lab work, bone age xrays, etc. My son also was diagnosed with torticullis at the same time..so we had lots of physical therapy to repair that. I felt like I had to go through with the testing b/c I didn't want something to be overlooked. It was really incredibly taxing b/c as his mom, I was the one taking him to all these appointments. At the end of the day, he did prove to have some GI issues, but overall, he is a healthy, very fiesty little boy. I stressed, and stressed...and although I did learn to look at now, we got so busy with all those appointments, that they were often the now. My biggest word of caution is don't let all this rob you of your sons "baby" year. I regret to say that I feel like that happened to me. It makes me sad, but all that testing took over the fun times. So my advice is to cherish his baby time now. Please learn from me and don't let anything take that away from you. Here is one more thing..that might sound kind of crazy, but I want to share it with you. My son has an older sister. I also try to work from home. Life got so busy, with a baby, a bigger sister, working, and all those tests...that I feel like I didn't spend as much "quality time" with my son as I could have. As much play time as I could have. Then, as I mentioned, I was the primary one taking him to all these appointments. As my son got bigger, I saw he seemed to favor my husband. I actually talked to my therapist about it, and it all makes sense. Crazy as it sounds, but I feel he was equating me with all those negative tests, and then me getting so busy,etc. Since I realized that, I have really spent more time just BEING with him. Really playing with him, doing special things with him. Our relationship has blossomed, and he is really turning into a complete mamas boy. Just a few tips. This might not address the medical aspect of what you are going through, but you WILL get through all of this medical junk, and what will matter at the end of the day is your bond and connection with your son. I am sending you peaceful energy...and like all the other moms wrote..BREATHE!! :)