Re: sunden fontanel question plus other stuff ?'s

[Guest guest]

Darla,

We have so much in common!!!!! My daughter is 5 1/2 now and I will type in some of my experience with her...

These are some symptoms I have noted in her 9 weeks of life:

*severe jaundice only getting better after becoming dehydrated at 5 3/4 weeks old

no issues with jaundice except at birth

*breathing problems at birth and for first couple weeks-very irregular, struggling, etc.

I did not realize how much was having breating problems until I asked for a apnea monitor at home so that I could monitor. I becaome suspicious after multiple hospital stays and every time we were in, they would hook her up to a monitor and she would have several episodes of not breating. (this one is a long story if you want the long version let me know)

*frequent apnea episodes during sleep and also when on the breast even though her nose is NOT covered by breast

was lethargic so much that if I would not have had the apnea monitor I would not have know about it (she has mild cerebal palsy due to lack of oxygen at birth) But after all of this time I just believe with mito her body especially mucsles were so weak that at times the body just would stop working.

*excessive gag-when she opens her mouth to go to breast she gags even before the breast is in her mouth and then after it is in her mouth she will gag also

Eizabeth did not have a gag reflex due to low muscle tone. When she was 9 months old she had had pneumonia 10+ times and bronchitis continueously. That is when a speach therapist asked me to ask my doctor for a Modified Barrium Swallow. This is where we found out that 98% of what I put in her mouth would go into the lungs instead. It is amazing she was still with me at that point. But this could be a sign of aspiration. After she was healthier and had a gtube when we started to try to make the swallow muscle stronger we had to work with a speach therapist. At first I thought that this was rediculous, boy was I wrong!! She gave my the silliest "exercises" to do and home and every one of them worked to make her swallow stronger.

*Excessive swallowing of air during nursing/lots of burping (Before RSV it caused lots of gagging and could feel tummy muscle lurching but since RSV it has caused lots of vomiting)

Again, due to low muschle tone, she did not shows signs of aspiration but when we were feeding her by mouth she would get alot of air because of the weak swallow muscle. She had projectile vomiting (we reduced feeding to 2 ounces at a time, it seemed as if all I ever did was feed, and clean up the vomiting. Until she was older.

*Reflux/vomiting issue as stated above

has/had reflux problems and she was put on Reglan and Zantac, this helped alot to control the vomiting. It was given to her about 20 minutes before a feeding, and Zantac was 2 times a day. This was our first sign of relief, besides the gtube so we could get food in.

*when held, arches back and pushes away rather than relaxing/very rigid feeling

arched when she was refluxing, as she got older she was able to tell me her "throat" hurt. It wasn't a sore throat, it was the acid burning. I think this is what the Zantac helped.

*left side appears to be weaker than right-

The cerebal palsy has is only detectable by a pediatrician, neurologist or a therapist. It is due to lack of oxygen, but I always wondered if it had gotten worse during those months that I did not know she was having breating difficulties. I knew she kept "changing colors" in waves, but it wasn't clear to me then because there were always so many other tings going on.

her left when sat up turns to the side in an awkward position rather than coming forward as the right does and her left arm when on her tummy doesn't support her as well as the right arm

's body would curve to the left like the letter "C" but this was due to two things; weak muscle tone and cerebal palsy

*frequent sunken fontenals even though she has gained weight well and fills diapers well

This was one of my many constant complaints. I could leave my house with her fontenal fine -- go 10 blocks to the Dr. office and she would be dyhydrated! The Dr. even had her nurse come to my house, check her head, then drive me to her office. It always did it! She has mostly outgrown this, but the way the mito works in anything out of her normal routine would dehydrate her. Having company come over would "stress" out her system and she would dehydrate, taking her out of the house.. She lived on pedialyte. Now I can tell by her eyes, they will turn grayish. We always have pedialyte on hand for her gtube, but she is also able/willing to drink some Gatorades. This also helps with her bowels. We would have boughts of severe constipation, then severe diareaha

*Sleeps much less than the normal infant during day time

would only wake up if we forced her. We had to set the clock and wake her ever 2 hours for 12 months straight. She still requires alot of sleep, but shen she is up in the morning she has so much energy.

I wonder if she needs to see a reflux specialist or someone who deals with issues of hyposensitivity of the mouth/tongue, etc.

I would definatly suggest a modified barrium swallow if you have not had one and ask to see a speech therapist for swallowing issues (taking in too much air). It can't hurt to get an expert opinion.

Also, the fontanel issue is bugging me because she vomits quite a bit so I am assuming she is dehydrated frequently yet she seems to put out plenty of urine and has energy.

put out alot of urine, but she did not have a normal blood test for the first 2 years of life when it came to dehydration (we did a once a week blood draw). Dr. Cohen told me that with mito in some people they just require more fluid. I see a huge difference after using a Gatorade or Pedialyte.

Darla, sorry this was so long. But I wish I there was someone for me to share these "odd" things when was younger. It was this list that helped answer so many of our issues. Please feel freed to email any questions.

Patti

Darla: mommy to Luke(to be tested in Feb for Mito issues), Leah(soft signs), , Isaac, Tirzah, Asenath(My Mito girl), Kezia, Marquis, and Zipporrah

[Guest guest]

Darla,

I have nothing to add that others haven't already said. I agree that

there are enough " things " to warrant further eval.

I am so sorry for your worry and concern. I'm so sorry that mito is

something that any of us have had to learn about. My prayers are with you

and your family.

Lee

Mom to Red, Ada & Angel Lily

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

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[Guest guest]

Darla,

I have nothing to add that others haven't already said. I agree that

there are enough " things " to warrant further eval.

I am so sorry for your worry and concern. I'm so sorry that mito is

something that any of us have had to learn about. My prayers are with you

and your family.

Lee

Mom to Red, Ada & Angel Lily

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

Darla,

I have nothing to add that others haven't already said. I agree that

there are enough " things " to warrant further eval.

I am so sorry for your worry and concern. I'm so sorry that mito is

something that any of us have had to learn about. My prayers are with you

and your family.

Lee

Mom to Red, Ada & Angel Lily

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!